My process of writing has been interesting to me. I usually spend a couple days writing/editing in my head. Actual writing here sometimes flows out easily or involves many editing read throughs. The titles are either the starting point or develop at the end based on what I wrote. I don’t post until it all feels like it came together as planned.

This post will be different, the urge to write just came out of the blue. I don’t have a clear thought or topic – my brain feels like a huge ball of stress – tangled – knotted – hidden ends – getting tighter the more I try to get it out. It’s hard to know which end is up, what is a cause or effect.

The report from a recent scan has terminology I don’t fully understand. I know better than to search the unknown words. I won’t officially get answers for a few more days. However I understand “Attention in follow-up is recommended” means more testing of some type.

I have labs drawn every 4 weeks, just before each treatment shot, with continued changes in a few values over the last several months. I’ve been feeling a off for a while, but can’t fully explain how or what is not right. How much of this is from physical changes caused by the altered values? How much is from stress? Will I ever feel normal again? Or is this where I’ll be from now on?

My usual stress reducers are not working as well – I can’t (safely) take a higher dose of meds – I can’t spend more time in the gym (without losing my job) – I don’t find joy in social media (it’s not a distraction anymore) – running out of ideas.

I’ve also been having a hard time with anything ‘retro’ – from my Gen-X past. Anything reminding me of my childhood or even my son’s childhood… music, tv shows, videos… make me sad & mad. I want those easier times – not this crap.

I’m tired of being stressed. I’m tired of being scared. I’m tired of being tired.

And don’t even get me started on the complete S*** show going on outside.

I have a draft post I started over a month ago of topics/titles I wanted to explore. I haven’t had time to sit down and ponder. And now I am not really able to focus on this blog as I intended it to be – for me to process my cancer.

Having this chronic, non-fixable, ever-changing disease has been the primary theme in my brain for the last (almost) 4 years. It’s always there, in my face, every day. I have found ways to cope, places to get some reprieve from the scary thoughts and support from very special people.

All GONE! The current state of our country has taken any hope for safety and comfort away. Everything about this is beyond scary. I am in a constant state of panic – even while on meds.

My livelihood is threatened – GONE. Those in charge are focused on dismantling education and the research needed to keep it current. Untrained “influencers” are spreading misinformation faster now, and professionals are losing their voices from screaming.

My retirement plans – GONE – might have to work until I die now. Will I have to figure out how to supplement the loss of social security to exist? We are finally able to renovate but dare we use the funds? Travel again? Is my money safe or already stolen?

My health – the hope for a new treatment option, maybe a cure – GONE. Those in charge have no regard for science, which is what’s currently keeping me alive. How much longer will I get to have treatments and scans? What will happen when (not if) my cancer starts to act up? Will I have access to the next-in-line treatment?

As a parent I want a better life for my son – GONE. My hope for him and the world being left for his generation is dim. Food safety is compromised, food sources are being targeted, the environment is being severely damaged – all for no reason other than egos.

The worst part – who do I trust? Who has my back? I’m questioning the morality of those who think these changes are positive. The thousands who have already had their lives ripped apart in one way or another – how soon will it be our turn? I am so very sad – the loss I am feeling right now is… (the word I wanted here – GONE).

Way back when I started this blog I repeated the urging to speak up if something doesn’t feel right. If I hadn’t mentioned symptoms to an NP I see for the breast cancer followup – the NET cancer would have been missed for longer than it already had. I still think this is important…

However, now I don’t usually follow my own advice. It feels like I have so many issues – most are minor – easy to ignore. I can list ~10 things I should probably take care of but probably won’t. Anytime something new develops I adopt the ‘wait and see if it gets worse’ or ‘suck it up’ mentality. But how long should I wait? How do I measure ‘worse’? My fear is either it’s something significant or it’s just me crying wolf.

When do I speak up and to whom? Part of the issue is I’m not sure who to tell what, which provider needs to hear about which concern. What is relevant to my oncologist? PCP? Cardiologist? GI doc? …. the list goes on. They all ask the same questions at visits, but I don’t speak up because it’s too complicated. How much do any of them understand the connections between my medical history, treatments, lab values, medications and any new symptoms I mention? Is the issue significant or just me crying wolf?

None of my family or friends, even those closest to me, hear most of the complaints I could verbalize. I don’t tell anyone around me because we all have issues and it sounds like I’m whining. It is easier to stay quiet, which also helps me ignore the need to deal with something. Is it worth telling them or just me crying wolf?

Another glitch in the speaking up plan… my life has become too busy to make time to deal with anything else. It’s too much trouble to make yet another appointment. I don’t want to spend my reduced free time seeking providers. It’s harder to find a time to squeeze in a visit. Does the issue really warrant the need to call – or is it crying wolf?

Do as I say, not as I do – speak up and advocate for your health.

A recent medical concern ~ unrelated to the cancer~ added to my list of new and exciting test experiences. It also added to my ability for stressing about possible outcomes. Results were not as dramatic as I had envisioned (surprise-surprise) but will still require more followup with a new provider. A fun-filled 7-page report from this testing included a “Problem List” [a.k.a. my past medical history] = a list twice as long (4.5 pgs) as the official report part from the test itself. This started me thinking…

… which continued on a recent drive to another medical appointment. I got myself worked up over the drive itself. I’m so tired of going to appointments & tired of going alone. Luckily I don’t physically need any help and there is really no reason to ask for accompaniment (had to spellcheck that word). Everyone is busy, no need to keep more than me tied up in a medical office. So… alone I go.

More thinking… I feel alone a lot… an emotion I encounter quite often. There are others around – but not – everyone is busy. Work: new position – less teaching, more admin-type duties = more alone. Gym group: oldest – last one done, my results are not comparable = more alone. Other daily events: e.g. meetings or appointments – people are involved, mentally challenged in groups = more alone.

Even more thinking… the crap in my own head is what I rely on for company – which is mushy quicksand. I get trapped in it, sucked into the suck. I don’t enjoy my own company, the self-talk easily turns ugly. When I’m in this state I can’t imagine anyone else being able to tolerate it, so… Avoid others: protect them from the suck = more alone.

So tired of thinking… so tired of alone in the suck.

WAIT!! – I’m not ready yet!

There is way too much change going on right now at home, in my extended family and now at work. None of it is necessarily negative but it’s more than my brain can handle at one time.

I totally planned to coast at work for the next couple years and then skedaddle. I love teaching – hate grading – and was comfy just maintaining the status quo. Then change happened. I agreed to take on a new position in addition to teaching. My teaching load has been reduced, my other duties as assigned are much more now. It’s not completely unfamiliar territory but as I dive into the details I feel I’m in way over my head — my head is not where it used to be. My brain feels slow and mushy which I attribute to all the physical and mental effects of the f****** cancer.

I have help, I have a mentor. We have been working together in our program for over 13 years. But I feel alone in this change because they are also learning a new position. I am very familiar with the frustration of someone having to do two jobs because no one was hired behind them to fill a past position. So I hesitate in wanting to ask questions or take up their time, but I don’t have the brain power to learn this on my own, but I don’t want to be a bother, but much of the new job makes no sense right now, but they don’t have time to do two jobs…

A concept I discuss in one of my courses is the Peter Principle (not my husband) – as people are promoted they rise to the level of incompetence – my fear is I hit this mark. If I did and I fail – it’s not just my job, but this new responsibility affects so many others. I’m just hoping my brain can step up and work correctly. This is going to be a bumpy ride!

I’ve heard & used the phrase ‘fake it till you make it’ many, many times throughout my adult life. I have practiced & perfected the faking part.

If I’m asked how I’m doing, my current go to is “I’m upright and breathing”. “I’m fine” is so subjective now. I can’t define fine anymore. Does fine mean there’s nothing wrong? No pain? No abnormal feelings? No worries? If so – I am never fine.

I censor the issues I perceive as being a problem. It takes a lot for me to tell anyone, even those closest to me, what is actually going on. The majority of my random, unexplained aches & pains stay in my head. I don’t tell many about most of the things I experience. Sometimes it’s because I can’t explain it clearly. Often it’s to avoid being a burden or whiner. Then there are those things I try to ignore because I don’t feel like dealing with them, or don’t want to figure out which provider to contact, or just don’t want to know.

I grew up in the ‘just walk it off’ / ‘you’ll be fine’ / ‘rub some dirt on it’ / ‘just ignore it, it’ll go away’ era. That is still the mentality I tend have but it’s harder to ignore things now. Any literal gut feeling of abnormality brings on what I would term PTSD from the pre-diagnosis period. I lived with the incorrect diagnosis of IBS for 5 years and dealt with horrible GI pain intermittently. The 2 bowel blockages after surgery had the same intolerable pain. Any time I have any pain in my GI area I panic – but I also don’t tell anyone because of how often these come and go. Heart palpitations – tingling in my hands – shoulder pain – nerve issue in a foot – all come, all go – I don’t mention most of them as often as I feel them.

I’m good at the faking it part – how do I know when I make it?

…and counting

I live life in 4 week increments – lab work / shot – repeat. This is my 40th butt dart.

The shot is quick, the needle is large.

I spend more time waiting for it to be prepared than the actual darting. The doctor reviews my labs – okays the shot… pharmacy has to send it up to the infusion room or the office depending on my visit – the shot has to be warmed up, then mixed which seems to be difficult.

Today I got to wait an extra long time for insurance approval before the above process could even start. This was spent sitting on a hard wooden bench – I can only play so many games of solitaire. Many times of answering “no I don’t need help, yes I’ve been helped, no I’m not in line to speak to a scheduler, I’m just waiting for my shot”. I considered asking for a job helping patients find the exit door.

I can’t plan anything important after these appointments because I never know how long I will be stuck there before being stuck and released. These darts keep me going but now I’m dealing with side effects of the medication.

To be continued….. #41 in 4 weeks…

One hand or the other?

Retirement planning – we recently met with a rep from our retirement plan company. One question asked – what age do you plan to retire? That’s a weird concept to begin with. All our discussion was around the age we picked and what we would have based on current account amounts – & – what more do we need to do to have enough. On one hand I need to plan for existing past retirement… on the other hand will my efforts be wasted and will I miss out on using the money now? Either hand seems like a gamble.

Thyroid tests – I had a discussion with my PCP about current weight gain. She ordered a retest of my thyroid hormone levels which hadn’t been checked in a while. On one hand my levels could be off and I’d need a medication adjustment… on the other hand it’s age, metabolism, snacking issue. Either hand requires more changes.

Medication side effects – my treatment involves the butt dart I’ve mentioned before – every 4 weeks & I have to keep track of which side is next. I literally have R & L noted in my medical calendar – a completely separate calendar for all my doctor appointments. On one hand – the medication keeps the tumors from being active and reducing the risk of further growth or metastasis… on the other hand it causes issues like diabetes to develop – I am now early pre-diabetic. The medication to reduce the risk for the breast cancer recurrence caused osteopenia to develop. Either hand has medical ramifications.

Random pains – especially in the abdominal area, keep me guessing. On one hand – is it something I ate not agreeing with me, gas, a sore muscle… on the other hand is it a tumor acting up, growing or newly formed? Either hand has me on edge all the time.

These hands will likely – eventually – force me to choose between continuing or trying a new treatment vs. quality of life.

In a Spiral – by Phantogram
I can see the end is coming ’round
Every day, every day, in a spiral
Better help me now, I’m going down
Every day, every day, in a spiral

Currently this is one of my favorite songs. I liked it before I paid attention to the lyrics. Then the more I listened, the more it resonated with me. Part of the song description by the band: “..inspired by the ancient symbol of the Ouroboros, a serpent eating its own tail” describing the connection between social media and life. It has a different meaning for me.

I often feel like I am fighting a spiral, trying not to let myself get below the surface. I’m able to recognize this starting sooner than I used to. But once it starts… it takes all I have to keep myself from letting things get dark. I’m learning the triggers, trying to figure out ways to avoid them or get myself back up. The spirals make me tired.

Land of the Lost – a short lived tv series in the mid-70s but one of my husband’s favorites. I never paid attention to it back then but I’ve seen a bunch of episodes as he re-watches them now. The intro has the dad & kids being sucked down a whirlpool in their raft & ending up in the Land of the Lost – dinosaurs and all.

I feel like I’m in my own land of the lost – no dinosaurs here – but things are very different than they were before. I keep trying to get back to who I used to be, where I expected to be at this point. It’s not possible, I have to adapt to this new place instead. But I’m not sure how. The spirals keep me very busy.

I feel like I live in the shadows. I’ve always felt like I didn’t belong – I don’t know when I ever felt truly a part of a group.

From a very young age – memories starting at what ever age I was in 3rd grade – I’ve never felt accepted. My approval in a group depended on the leader – I never knew what would change to make me in or out of favor. Out of favor meant being bullied, but passed off as ‘this is what kids do’. Neither school or the neighborhood was safe from the question of where am I today in the food chain. I can think of what feels like hundreds of examples, probably not worth typing out here, maybe someday.

High school didn’t get any better. I had very few friends in school, I didn’t fit in with most groups there either. I found solace at a local horse farm where I spent many afternoons and weekends outside of school. I made a few friends there but the same issues of not fitting in still existed. I tried – but by this time my low self-esteem and craving being wanted led to poor choices. The horses and the work kept me going and probably prevented further “darkness”…

College – same – I had friends but never felt like I fit in… animals filled the void.

As an adult – both careers – I have made several good friends… and found a couple I hold close to my heart. Grad school in between was tough – I was older than my fellow students while being taught by my age peers who were not my professional peers = not part of any group.

All throughout my life – I absolutely love my family – pretty much always felt on the outside.

Here I am at 58 – still triggered by anything remotely resembling not fitting in. This has gotten worse with the cancer diagnosis. My body doesn’t feel completely mine anymore – everything about this separates me even more from everyone else. Any situation I perceive as separation from ‘the rest of the group’ or ‘being excluded’ activates memories of my past and a reminder of my current health situation.

When asked why I’m reacting to these situations I can never fully explain it. What comes out of my mouth sounds silly and I feel as if I’m acting like a 3rd grader. The reality of the experience is usually not how my mind is perceiving things. Maybe someday I’ll figure out how to be an adult. Until then – shadows.