Acronyms are now running my life – the latest portal message from my oncologist: “Let’s repeat a CMP this week. If LFTs are not improving, I will order an MRCP to get a better picture of the liver.” Acronyms are all over my chart, all over my lab scripts & procedure orders. In grad school and my dietetic training I learned many of these terms. I don’t use them in my classes now. It’s kinda become a running joke at work — how much clinical nutrition I don’t know anymore.

But I know enough that I worry when labs are not normal. I understand how things work enough to know my liver is pretty critical – for more than just digestion. The issue for me is how much to worry. How much weight should I give to the odd results – are they really odd — or just a fluke? Am I okay with a ‘wait-&-see’ plan?

This cancer causes so many potential issues either by just being there or producing hormones. The treatment I’m on also causes it’s own issues. All of this has made me hyper-focus on every little twinge or odd feeling. When labs are out of whack my anxiety kicks into high gear. What caused the wackiness? How do I fix the numbers? Will they ever be normal again? What new issues will develop from them? I go on and on and on…. in my head with this.

So… the repeated CMP did not show improvement in the LFTs – an MRCP is now scheduled. Yay! – a new procedure to add to my list of experiences!

In the last week I have had to fast twice for appointments. I’ve had 2 medical procedures – one an annual check, the other was followup for an odd CT scan note last month. These were followed by 10 different labs drawn in one sitting (8 tubes of various colors). I made a comment to the tech about the number of tubes and got a “you did this to yourself” response. Yes, yes I did… I chose to lump all my labs together instead of driving in 3 different times and fasting more than one time. I don’t have many options to make this process easier on myself.

Results from the labs are showing an issue that was not an issue a few months ago. I have no idea what this will lead to but I can’t imagine anything less than further testing. I don’t know how I can fit in yet another condition to manage. My medical list is ridiculously long. Appointment management is my second full-time job.

Every time something like this comes up it feels like a slap in the face, another reminder for me… “oh yeah that’s right”. It never leaves my head… just sits quietly… like a jack-in-the-box toy until — “don’t forget – you have cancer”!

I am so scared – scared of what’s to come, scared of whether I will be able to handle it. Will right now be the best I feel? – which isn’t super great but tolerable. How fast will the downhill slide be? When will the hard decisions need to be made?

I am trying so hard – I am doing everything I can to stay alive. I don’t have time do more. I am following all the rules – exercise, diet, 0 alcohol – WHY? Why bother trying anymore? I want to stay around for my family – I will keep working at that goal – but mentally I am toast right now.

Coloring mandala pictures is often suggested as a method of relaxation. I received more than one book from well-meaning friends back when I was recovering from surgery. One interesting observation during this time = coloring is not therapeutic. I do not find coloring relaxing – too many color choices – too many decisions for where to put all those colors – spaces to put the colors are too small to stay in the lines = all around frustrating. I do think they are pretty when they are done.

For much of my adult life I’ve made it a priority to see my PCP regularly. Usually this was just for annual checkups, and I felt kinda silly since there was nothing needing to be addressed. I was happy to do this because I was always told “everything looks good, see you next year”. I now have way more providers involved in my care on a more frequent basis – I miss the olden days.

Now my visits with my PCP are spent joking about the new issue(s) my body has invented to require more attention. In my last visit with her, she stated – our goal is to keep you within the lines. She was referring to my lab values. I’ve mentioned in the past I have lab work done every 4 weeks just before my butt dart. Things have started to shift – more of these numbers are trending toward one or the other end of normal. Several are staying outside the lines.

Because of this shift I currently have 5 separate lab scripts to complete over the next 2-3 months. This is in addition to 3 scripts for various testing and one prep sheet for another test – which have been ordered based on lab values and symptoms. This is a lot of paperwork to track, to remember to bring with me at the right time, and get myself to the correct location.

My new hope is for lab values and test results to be WNL [within normal limits]. Trying to keep my body in the lines is frustrating.

Day before surgery ———- 4 years later

The butt dart this month was #50 [great April Fool’s joke]. Every 4 weeks…

This week is 4 years since surgery & my official diagnosis. Likely already there for 5+ years at that time…

Tired of the stress – tired of fitting in multiple medical appointments into an already busy schedule
Tired of the worry – tired of guessing what that new pain means
Tired of the fear – tired of knowing difficult decisions will be in my future
Tired of the fatigue – tired of the physical tolls treatment and tumor hormone shifts are causing
Tired of the added necessities to a daily routine – tired of managing multiple medications just to name 1
Tired of the swollen eyes and runny nose – tired of seeking secret/safe places to break down

This was not my expected aging process. 4 years down – planning for many more – but I am TIRED.

Side note: I almost always listen to music when I write, mood music… tonight the below song was playing while I worked on this post

Zero 7 : Simple Things from the Likufanele album – a spoken part of the song…
We get up in the morning, feelin’ tired
Sometimes we feel good, sometimes we feel bad
But we gonna do it with feelin’
From the root to the fruit, that’s where everything starts
What you say to you?
Don’t stop
Don’t stop

Tired… but I won’t stop

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?