All I want for Christmas is a mental health break from cancer

How do you take a "breather" (give yourself a break) when it's mental health? 

A two and a half word answer. You don't. 

Cussing warning, there's F-bombs in this blog post.

As a few people know, my Mom is going through chemo for Christmas. As I type this she is pulling her hair out into huge piles onto the arms of her reading chair. "There's enough for three birds nests. All my life the hairdresser admired how thick my hair is..." She goes on in a creepy way that is VERY not in-line with my memories of her. My Mom is intelligent, examples: she remembers all the names in biology, can still identify many plants when out walking and all the parts of a human from nursing school. And unlike me and my Dad, she can spell. When questioned she can recall more grammar and spelling rules then I ever learned; yet understands creative prose and writer's style being valued over what is technically correct English. And my Mom’s handwriting used to be the neatest cursive I've ever seen.

 … And now? Her handwriting is jagged and scrolling all over the place, she’s crossing out words and grumbling about messing up Christmas cards. "Chemo brain is real." She says to me glancing up in frustration. “I’m not sending a reply Christmas card right now.”... Maybe she will try again later?

What surprises me (should have know better), I'm more upset about her suffering than I expected. Having gone through chemo myself, as we are a BRCA1 family, I was mistaken when I imagined I would handle it and be helpful because I could relate to what she is going through. Instead the actual helplessness of reality, watching it physically drain her, is? ... I'm having to work very hard to not be angry at cancer, and worse the health team administering the chemo. Okay, I yelled once over the phone. I’d never do that in person. Never. I don’t do well with the disconnect of voices over the phone, sorry to whomever wasn’t able to answer our questions. 

No doctor or nurse who is able to answer our questions has done so, they just let her ramble incoherently and checked a box, as if they did something. And we have not yet met this latest oncologist. There is zero survivorship care, palliative or mental health care as an option for my Mom from this care team.

Soooooo...? Mental health huh? Walking, reading, art therapy, writing therapy and playing video games, there's no mental health care professional in this story for me either. I've been attempting to get survivorship mental health care since 2018, actually before that, but that's when I knew I was losing it, and really needed help. I'm embarrassed by how crappy our access to mental health care is in America. Even guidelines for people to help deal with other folks who are not doing well mentally, is a bad joke that makes the situation worse. Don't. Just don't feed my your crap about this site or that, the latest trend or meme in mental health care. If you haven't been through 24 years and three rounds of being butchered alive by cancer starting at age 26,... (you can't know). I need someone who understands/works with young cancer survivors before I'm dead, thank you very much. And I know I'm a rarified demographic. So, I haven't given up, I'm just looking for the correct doctor. Also, it's too late now. 

When I really needed help, I didn't get it. I'm already turning into an old dog that refuses to learn new tricks. Huh what am I saying? When I was young I remember seeing some middle aged lady ranting, very unhappy (more than once). When I was a teenager she was an old lady. I remember wondering then, what happened in her life to make her that way. And now, I'm her, still middle aged according to my folks. My Dad says he thinks middle age is the most difficult mentally. When you are young, you are young. When you are old there’s no expectations for you. When you are middle aged, then it’s what have you done with your life, and you better hurry up and do it before you are really old and start to decline physically so much that you are no longer able to do it, whatever it is that you are going to do with your life. 

Neurotransmitters. I believe more in those chemicals and neurology than I do in psychology. Psychology is not a science. Tho, after the Diagnostic and Statistical Manual of Mental Disorders (DSM; latest edition gets done “cancelling” vague and broad and wrong mental diagnosis(s), and the field stops poisoning people by throwing prescriptions without care at people. Medicines that have the opposite drug reaction bidirectional from the expected outcome, or too much of a delicate combination that needed to be prescribed in a lesser dose, for a shorter time, in combination with therapy, and appropriate physical therapy (as our minds are attaches to our bodies), and nutritional science, please. Psychology may get there, into the realm of scientific possibility, some day. 

Why, if I am so down on the entire field of psychology am I complaining about lack of access to mental health care? Deep sigh and a long pause. My life experience, the one time I was sent to a mental health specialist after several major cancer surgeries, I was prescribed one of the mildest "mood" medications on the market. And I tried it, let him convince me to try it for a recommended time, to see if it helped. And I HATED it, I had a paradoxical reaction, and quit cold turkey. Yeah great. How many of the tragedies we hear about in the news are the result of someone who is mentally troubled, being off of their meds? Or worse, being over prescribed so that they feel nothing at all, as they do horrible things. 

Luckily in my case it was only the depression/anxiety "voltmeter" reading being wrong. The what? The voltmeter is in quotes because it is not science. Many people have told me that I have depression. And the evidence, again and again, proves that the primary symptom of depression is the entire signaling system (including your immune system) shutting down, while the primary symptom for anxiety is worry, and high blood pressure, etc... at the other end of the "voltmeter". Wah la, you give someone, even a mild drug for depression, when they are actually sad about something real, (like cancer destroying their life) but they have anxiety, then you get a bidirectional reaction opposite of the expected outcome. To be fair, it's not physically possible for any drug to act on only one symptom, there are over 100 known neurotransmitters, and the actual number is unknown. All these neurochemicals work together in "chains", and in cycles day and night, with other body chemicals, like the gut mind connection. Pour that on top of my favorite self-medication that is a very mild downer with other herbal relaxants, like hops, a.k.a. beer, and you get a mess, that's the opposite of helpful. 

Yes, I am a very mild case. Like one or two good beers is my chemo "tested" liver's limit. Even my cussing is specifically directed at cancer and the American healthcare billing system 83% of the time ... and because of added suffering because of medical errors over the course of my 24 years of “surviving”, medical records upsets me 10% of the time. 

Medical records is a real trigger for me. That lack of important medical information is what is troubling me about my Mom’s situation right now. To sum up my rant, Cancer, medical records and healthcare billing earn a total of 93% of my rage. Not the care givers of any specialty, not the doctors. Not even the psychologists! And certainly not the therapists and nurses in the trenches. 

Sooooo...? No mental health breaks for any of us for Christmas. Just sit around being jolly and merry, "Ho, Ho, Ho!" while pumped full of sugar (the number one "drug" problem in the USA is sugar IMHO). Nothing makes my mood swing more than a sugar crash. But, this year? There's not much sugar in the house. Last week's peanut butter cookies are long gone. And the focus for cooking and snacking is on healthy small meals to deal with chemo. I just gotta stay sane, don’t worry (don’t spiral things all out of proportion) and remember to breathe. 

P.s. Note to self, blog post is too long again, it won’t relate to a lot of people, does the title imply this? The real mental health “break” is to forgive yourself for being human. You are you. Know yourself to learn how to respect who you are, so you are able to get to love and peace. 

And to fellow cancer survivors. It’s okay to think “Fuck gratitude and pink ribbons and all that crap”, when it’s honestly how you feel. Get it all out, and then get back to living for what’s given in each moment, one day at a time.

☮🧠s (peace brains) Uva Be 

“Happy” New Years. 

January 3rd, 2024

My Mom is in pain. She is exactly the type of patient that the pain meds would work the best for, for her body, for what is happening to her because of cancer, cancer surgeries and chemo. She is exactly who the pain meds were designed for. Yes, I repeated my point a lot there. 

BUT,... "evil" people, like the ones who messed with my medical bills, in 2019 and 2020, adding thousands of dollars of retail pharmacy where there was none. In my case, when scheduling pre-op called I requested alternating Tylenol and ibuprofen. I took zero prescription pain meds after my last major cancer surgery in 2020. 

But, the VERY messed up medical bills, the ones that required multiple reports to the state insurance commissioner to be filed. Wasting everybody's time, medical records to billing and back again, wasting more money and time, the State's money, insurance money, oh and my time. Time that IMO, should have been focused on healing or making art or writing. 

Now, years later, my Mom is dealing with weird alternatives (okay drugs for nausea and for her comfort that I don’t understand) because of other people, because of the opioid epidemic, and all the other pain pills I personally don't even care enough about to know the names of. 

And this is in addition to an adjusted rate the chemo is given from every week, to every three weeks. Five years ago, in 2018, my Mom's chemo was every/7 days. This time in 2023 the chemo infusion is every three weeks/21 days. They told us it was a National trend in the US. effectively tripling the dose they infuse at one time. 

And I’m angry about mental health? When as far as I have witnessed there isn’t even enough oncologists and other members of the chemo infusion teams to treat all the cancer patients at the same rate as they have been doing in past years? 

Yes. That is a question. I have had no confirmation of if this is a National trend to infuse the same amount of chemo, or treat 3 times more patients with 1/3rd of the infusion team work days, or not. Because I'm a writer who looks at these things I've looked at population demographics. And hey, that's why I wrote Un-Un-Cat.  The M in HUMAN. Trying to imagine a way to start working a way out of this mess for all of us in the USA. Not that I solved it, or anything. But, just like this blog post, I figure it's better to try, even if no one reads it, then it's just catharsis for my own sanity. 

dealing with social media

...or not. Where to start?

1. It's all about "me", or the shared bits of all of us.

Thinking about "looking" at screens.

Writers of memoirs and painters of self-portraits have known this feeling for centuries. A window to our soul and an apple a day...whatever.

This grain of sand (now in 2020, 1 in over 7 billion). Light plus silver halide particles on a film negative, capturing a thin layer of shadow and exposure framed in a box for a flicker of a moment.

Now multiplied by millions (those who share) and billions (everyone who has access to the interwebs) if even only by wireless phone.

That brings me to phones. While I ❤ art + fiction. And enjoy autobiographies ( esp. unplanned ones) and don't care much for biographies (esp. unauthorized ones). Phones?

The problem with phones is like screens; it's not about the device. It is all about the disembodied voices. It is the torture of the damn things "beeping" all hours of the day and night.

A sincere heartfelt thank you to the team who developed the 'Do Not Disturb' algorithm. Thanks for helping to reduce a lot of suffering.

(to be continued) 

In the next post, later with the ...or not dealing parts.

(1/13 to 1/17/2020 or 4 days later)

Uploaded this background to FaceBook in December 2019.

More than a few times over the years I've written long wordy complaints about how there has to be something better. I've quit FB, even deleted photos there, etc...

Today? I'm feeling like enough words.

(1/29/2020, 12 days since I added words here)

Twitter algorithms hunt up data from "web-crawlers" my searches, emails and whatever else my digital life lets "them" list and sell. The loudest crap buries tweets from my meek busy friends.

Facebook bought Instagram, it keeps attempting to remind me to log in. But, I have never done the FB on my phone.

This Blogger blog, Google purchased, now uses ad space attempting to sell add clicks to me. It knows I visit my own blog here while editing more than anyone else reads it. That $84 and change in my Adsense account went from $79 to $84 dollars in the last 8 or 9 years. It will never reach the $100 dollar threshold. So Google will never pay me. 

Medium paid me a nickel. They actually sent a deposit for that five cents! But, people stopped clapping when I got past the five episodes they could read for free. So, I listed all the episodes as FREE to read. It's against the rules to ask for claps. I haven't but, the cynical side of my sense of humor assumes they are blocking me since it's free to read my story posts there.

My own blog, www.uvabe.com always shows up as Not secure. Hmm...? I see this same warning in the paid-for URL on a lot of other artists' and writers' blogs.

The mean person who I fight with sometimes says, You will never be young and sexy, you will NEVER be an influencer. Why do you even waste your time? 

I say What else is there? It's what I've got, a little time to waste. Then I write this post as a writing warm-up for more important things.

On Not Stopping Writing

Monday a week and two days later. Blogs and social media feeds are upside down, we start at the end, call it now, and bury the past a scroll further down the page. Every now and then I look at the artwork and writing that I’ve done over the course of my life so far and attempt to figure out the best path forward. To make this less of a task of sifting through piles of paper and crates of ceramic art I’ve made a link list page here:

autobiography in-progress: art/writing on a timeline

I’m being recursive. Blog with links of blog posts, posted on this blog. But, it’s a shield of the past to push the reality of now further down the page while my hair attempts to grow back and I continue to survive.

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A ramble in the middle of still not giving up.

‘U’ who are you?

There is no answer. One soul anchored in bone, blood and flesh, an imagined ideal for an unanswerable question. The mind-body question is as wide as the universe and as small as a one-cell organism. Both true, a simultaneous contrary inside a ripple in consciously observed time called a body.

What is worthwhile?

Good work. Defining good work is like explaining what art is. Start with good. Living creatures thriving. In nature, many predatory and invasive living things thrive in ways that are not good for their prey or host. Even herbivores without room to roam or predators to keep their number down will overgraze. Good is balance. Work to maintain balance and the order of the cycle of living things, is good work.

Yesterday I did nothing. I didn’t think(a very rare day). All-day I stayed in bed and played video-games. Nothing with skill--digitally facilitated depression, basking in my uselessness in this society and economy, letting myself think whatever burbled up with the least amount of outside input possible. 

Why? If you are a soldier who gets a non-lethal hole shot in them, if you are a carpenter who accidentally takes a nail or a dropped saw blade you get no time to mourn that loss of a little piece of you, your flesh and body gone forever. 

When you are a long term cancer survivor you know what’s coming. I didn’t know I would be fighting for a piece of me at 26. It just happened, I was in shock and I dealt with it. I was a good trooper. Other people were in charge bustling all around. They did the best they could with the tools they had to fight for my life. Now, in my 40s round three of this “surviving”. I have moved past depression, to fight. Fight or flight. Only I can’t fight them and tell them not to cut off this part of me. I battle to pay the bills, death by a thousand paper cuts. Then I go, lamb-to-the-slaughter. I can’t tell you what it means to me. This latest chunk of flesh. I can tell you that cancer has taken so much of me, I listen to the plea of folks with body dysphoria and I think. “I like my body. I liked it, what’s left of it.” My identity, who I was, is not who I am now. Enough has been cut from me because of cancer that I am no longer the same person anymore. Giant chunks of my life, not only flesh, but years of fighting where I can’t think about art or write.

My art changed to totems of the immune system to symbolically fight a disease I can’t get my hands on and throttle. Writing changed so I start a book with my personal experience of getting a “heart-plug” removed (in reality it was a subdermal port with a line through my ribs directly feeding into an arty pumping away from my heart). This terrible experience where the anesthesia wears off and the surgeon and assistant are talking about carpooling, new vans, and soccer practice is grafted onto a character in my book. Lamb to the slaughter, he is a sheep-person… That’s the first scene in my 2011 story. In this world of trigger warnings how could I expect anyone to read this? It’s not what people want to read, it’s what I had.

The subject in this next work-in-progress is all the things we think/I hear and we/I can’t do because the world, the international economy is in a stranglehold of greed. We want to save the world. We want to do worthwhile jobs in science, technology, the arts and literature, but instead. Vegans flip bacon burgers with egg and cheese. A three animal murder joke to their beliefs, and then clean the grease trap, over and over. A genius that should be a music composer slaves away processing medical billing. He makes no music, hasn’t made any sounds in years except for screams of anger and frustration because he hates his job and he doesn’t have time to think about what he loves, what gives meaning to his life, music. An inventor who could greatly contribute to reducing the energy used by society is being disturbed from sleep because Amazon wants them to process the money-numbers from the past day at 3:30 am. Forget prototyping any inventions, keeping a roof over the family, paying for education so they have a fighting chance in this economy is all that happens. A Ph.D. naturopath doctor is scrubbing “toilets” in a campground while millions would greatly benefit, their lives would be substantially improved, every day, by preventive medicine. 

Those are just a few examples from my friends. Then there is me. I can’t edit. I never have been able to edit, not emotionally, not structurally. It’s not something I can learn, I keep trying, but. I post what I have, because that is what I have. I’m tired of spikes on my ceramic art. I was working on a pallet of bright happy colors of glazes and new curved shapes. I was attempting to get to a place in my art past fight to the meaning of a full mark-and-form-language to communicate more of my human condition than anger and defending myself. But, I couldn’t because THE WORLD was too unhappy. 

I hate politics and business. But, after a couple years of drafting and debating, I’m writing science-fiction prototyping to postpone the apocalypse and start to reduce damage to the earth and mitigate the long term, irreversible effects of climate change. Oh yeah! and hello world, it’s a political parody where a Cat gets elected POTUS in 2020 because a Dog from another planet, landed on her front stoop and after he died, she was so heartbroken she was motivated to get into politics. 

Never in my life did I ever think I would be writing a political parody. Then, right in the middle of this story no one can wrap their minds around enough to comment, again. The lab results come back, you have cancer, again. 

So, today, I’m not in bed playing video games. I’m back attempting to make sense out of insanity. The wisdom to know what I can do something about? I know I can’t cure cancer.

Work to prevent some suffering in the pending new dark-ages post-oil. Suffering caused in part by global economic leveling that will most likely result after the world’s fossil fuel-dregs blot-out the finite ecosystem where life thrives on this little planet. (i.e. our Earth is not unlimited). Here I am one more voice in the masses of social media writing down every good idea I have or have ever heard people discussing in this science fiction prototyping political parody. IMO writing this story to help "save-the-world" is more realistic than curing cancer. 


P.s. I know all the world wants to hear or bother to look at and “like” are cat and dog photos. 

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A warm-up exercise on what could be a beautiful Saturday, July 6th, 2019.

Just type anything that comes to mind… please, don’t just sit there staring into space. I’m seated at our dining table where I usually write. Approximately 90% of my hair fell out because of chemo and isn’t growing back yet. My ears are ringing and I have a near-constant tho slight headache. Because of some permanent side effects of the chemo drugs this round, round 3 of cancer (round 1 was in my 20s, round 2 was in my late 30s and now 10 years later, I am now waiting for, by my count, what will be my 10th cancer surgery in my still under 50 years of life. 50 is mentioned as the age when they normally start screening American’s for cancer. I haven’t made it to 50 yet.

This 2019 project isn’t planned to be easy or fun to read, I wonder how I’d be doing if my body wasn’t clouding my mind? I attempted to edit just now, but my anger seeps through into everything like blood in white cotton.

Anger, not depression. I would very much like some mental health help dealing, but what I have researched, results in me relating more to PTSD (post-traumatic stress) of soldiers who have lost parts of themselves young in war, and I know I don’t equate. I’ve suffered possibly 1/10th to 1/3rd as much as most military wounded have. I need to find a counselor who specializes in the trauma suffered by long term cancer survivors. Private would be better than a group, because I am not very nice to be around lately. I had a plan to do so, seek mental health help, but I was cut off from access to that resource by the greed of the only health insurance provider covering multiple counties in Washington State. Don’t even ask. No, I can’t afford to pay out-of-pocket for much of anything.

It’s very painful and frustrating to not be able to think clearly. As I understand it (again via solo research) the lizard brain shuts down a lot on higher thinking when a person is angry because it’s activating the fight part of fight-or-flight. Damn, I wish I could just fly away. Meditate like a guru not on my breathing, but on my immune system to spontaneously heal, and kill this damn cancer, without more cutting and worse, radiation. It doesn’t seem like it would be worse than cutting. But, the long term cell damage of the radiation I was treated with, in my 20s is causing complications to my everyday life now. 

So, I’m writing about this crap, instead of writing or editing. It’s medical and it should be private. There are repercussions, anything or more like everything posted on social media, the lawyers of the health insurance companies can use against us. I say us because they are hurting my entire family, not just me. “They” being the corporate entity who is calling the shots in the billion-dollar health insurance industry. Their profit increases even as the life expectancy in the US is dropping. Their drugs via the opioid epidemic is killing so many people they have tipped the statistical scales of a nation of over 300 million people for the first time in 100 years. Isn’t that the definition of criminal negligence? 

Just, FYI I haven’t been prescribed any pain killers. I am not allowed to take ibuprofen or even aspirin. I also don’t want any anti-depressants. That’s what the official opinion of my anger is, I’m chronically grumpy as a type of depression. 

So now what? I can post this and admit to my failure or post this as an excuse as to why I’m not keeping up with my weekly goal to revise and post one episode of a project that I’ve been working on since NaNoWriMo 2017. Yep, more social media “help”. However, the main character ‘Utah Green’ is from a 2008 project that I translated into a 2015 play for the stage. NaNoWriMo just helped me to word-vomit it out fast, because it was on my mind. I told myself, just type anything that comes into mind, and now here I am. 

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Still not back to writing, yet. Update, November 1, 2019.


Confession to myself about the state of our Health Insurance Coverage.

I’m not okay, nor am I “fine” thank you. Pain wakes me up most early mornings between 4 and 6 a.m. and I am a night owl who rarely, as in never get into bed before 11:30. I am being denied mental health care specific to the trauma I have suffered by the only health care provider option in a several-county block in Washington State. They have effectively created a health care desert because of their greed. Because of health care premiums that are over the 9.6% legal limit of our monthly income, combined with highly rated doctors, and hospital closest to our home being OUT-OF-NETWORK and therefore OUT-OF-POCKET, they are blocking access to diagnostic screening to determine the source of this pain that I have discussed, in humiliating detail to several in-network doctors. My current prescription needs adjusting and I do not have access to an in-network doctor qualified to determine what would be medically best for me as a long term cancer survivor because they do not have a “survivorship” team at all. I’m going to say this again, just to get the rattle out of my head. They have no in-network doctors for cancer survivors only a waiting list for cancer victims. Because of this fact, my family has already paid thousands in OUT-OF-NETWORK medical bills this year, bills that just keep coming and coming, from several obvious to me, medical billing code errors resulting in us not being able to pay down our debt at the rate we were planning on. They also ignore my last two primary care doctors because both were OUT-OF-NETWORK and therefore do not update my medical record and this has resulted in repetitive uncomfortable confrontations between me and the medical staff responsible for my care. I have filed several formal complaints, and am burnt out and tired of filing complaints. The Washington State Health Commissioner dismissed my case as closed while I was still waiting for a surgery date for a major cancer surgery. A less severe example: one test that is the very definition of preventive screening that is covered by my plan, went through three rounds of complaints. And the health insurance company adjusted my bill from $1,070.03 to months of letters and emails and calls later to $1,070.03 i.e. they didn’t even budge a single penny. And my most hated adige? “It could be worse,” I asked a Dr. Friend who visited my house to help me navigate my OUT-OF-NETWORK only “options” and she said. “You have a good health insurance plan. Better than mine.” And that is another reason I’ve not been able to file a multi-item list of complaints to the WA State Health Commissioner and re-open my case. As health insurance situations go, we are probably average in contrast to others with more horrible medical situations. We may not be able to pay down our debt as fast as we had planned, but we aren’t bankrupt or being kicked out of our home, yet. I may be dying of cancer or it may be pain that is a side effect of past cancer treatments. I may be going crazy not knowing with no access to the mental health care that I need. But, at least I’m not dead, yet, leaving my husband to pay medical bills, alone. But, the truth is, I’ve been avoiding people. When they ask. “How are you?” or worse. “Are you cancer-free?” I change the subject, because, I’m not fine, I’ve been waiting months for several out-of-network referrals. All the while not knowing what that strange mass I pointed to on a scan arguing with an in-network surgeon who honestly stated that he didn’t feel like he was qualified … it could be worse, he could have made it worse rather than being honest. I’m thankful for his honesty. But, that doesn’t fix the uncertainty caused by the daily pain.

I probably should not post this. But, I need to face it, move past it and keep fighting, so I am.

4th update -- November 4th, 2019.

After a long duration of feeling miserable, I researched up a theory on the web and a way of dealing for myself. I know doctors love when patients do that (as my guess is not an actual diagnosis). Tho not a treatment that will help for the long term, my regimen will have to do until I get access to the care I need. I’ve been feeling considerably better for the past couple of nights.