December 24, 2023

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, then shut the fuck up! 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? 

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.