…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.

The house I grew up in had a beautiful weeping cherry tree in the front yard. I’ve always wanted one at our house too. We finally had a young tree installed the summer of 2020. It was past the bloom stage so I was excited to wait for the next spring to see flowers.

Little did I know when I took the picture in 2021 my life would completely change the next day. Back then I didn’t know if I’d see the tree bloom again. I wasn’t sure what was in store for me with my new diagnosis.

Fight or flight: Most animals survive by having this mode at the ready. In my zookeeper years we understood this, but also knew it was important to provide small stressors to keep them in shape. By providing a new unknown object or rearranging their exhibit, they would stay used to adapting to new things. So if/when a bigger event occurred they’re able to deal & less likely to over-stress from it.

Time under tension: I often hear this phrase in the gym from our coach. It’s not just the act of lifting the weight or the amount of weight that has an effect. But it’s the amount of time the muscles are under tension from the lift influencing things the most. This needs to be within reason to avoid injury.

My 3-year anniversary from the surgery and NET diagnosis started with a scan last week. Results = stable – I have been since the radiation treatments ended in early 2023. But I still always feel like I’m in fight or flight mode. Every ache, every abnormal feeling I have internally automatically sends me into “what was that?” And then it leads to “when do I contact a provider about this?” – sometimes “which one?” – Mentally the tension is always high, not sure much more tension can I safely withstand?

I don’t know how people come to terms with chronic illness. Three years into this mess I’m finding this to be exhausting.

A while back, on a walk home from work, I was asked what I was thinking about. My usual answer is ‘nothing’ because I either can’t remember exactly or don’t know how to explain my thoughts. I provided the usual reply, but at that moment I was actually looking at the sidewalk and thinking “same, sidewalk, same”. The sidewalk was cracked, missing pieces, yet still functioning as it’s expected to do.

It’s just a section of sidewalk between campus and home. No one notices the issues, or may not even see them as needing attention. I suspect this won’t be changed until it causes a problem for someone and gets noticed.

My missing pieces are not visible, not easily put into words. They affect me almost daily but I speak very little of them to others. I don’t know where to start with descriptions. Physically they are minor inconveniences in the ‘grand scheme’ but cause mental pieces to come loose and swirl inside my head constantly. The continuous anxiety leads to overreacting to super tiny or weird issues a normal person would probably not notice. And I can’t explain the reactions either.

BYF – I’m just functioning as expected until I can’t… “trying” not to cause problems or be noticed.

Every time I purchase any type of lottery drawing ticket I plan what I’ll do with the prize. The odds are always stacked against actually winning – I know this – but the hope is still there. There’s always the letdown after not winning – even though the odds…

The first year after diagnosis was busy with recovery from surgery, getting into the routine of a monthly shot and periodic scans. The second year had super fun GI issues ultimately leading to my 4 radiation treatments. The tumors had started acting up so the radiation was hopefully going to put them in their place. It was another busy year with medical appointments and treatments as my second FT job.

The final radiation dose was in the early part of this year. Since then there have been a couple monitoring scans while waiting for the big diagnostic Dotatate PET scan. This scan will light up any existing tumors and let PET scan reader people clearly see what’s there still. This had to be ~9 months after the last treatment to give the radiation enough time to finish doing tumor damage.

So the waiting began in February and ended mid-October. In between these events there were 2 CT scans just to monitor but they are not as clear as a PET. The CT scans showed the tumor in my liver as shrinking, then not visible. Other changes seemed to indicate positive results from the treatment. So the hope started building. When I looked I could find stories of the treatment getting rid of all signs of NETs in some people – more hope. I fully know it will never be gone, I’ll never be NED, but hoped a lot during that time.

PET results — liver tumor is gone, most others shrank a tiny bit or at least didn’t grow, no new tumors are there = stability. This is my goal now. My oncologist, quite happy with the treatment results, was surprised at my not so joyous reaction. I can’t shake the disappointment in not winning the prize of NED. This is the first time I’ve really faced the permanency of my NET diagnosis – I was either too busy or too hopeful before this.

This situation knocked me flat – I’m still not functioning well. The mental game of all this has always been the struggle part for me. I’m having a harder time pulling myself out of this spiral. It’s affecting more of my life than the NETs themselves. I can’t adult… and feel like a burden to those around me when I’m in this state.

I would REALLY like my mind to be as stable as my scans!

I remember going to boardwalks or local fairs when I was young and playing games to try to win prizes. I was always ‘so close’ to winning something but I don’t remember actually doing so. Later, as a parent working at our parish carnival, I saw just how hard it was to actually win.

These days I feel I am playing a really bad game of whack-a-mole with my health. Most of this is related to medications. I take one to reduce the risk of a breast cancer recurrence – but that has lead to osteopenia. So now I am consciously working on calcium consumption and continuing with weight-bearing exercising as part of my routine.

My monthly butt dart helps keep my tumors from progressing – but causes high blood pressure and diabetes. I’m on BP meds but these have changed over time. First it was one, then 2, then and increase in the first, now off the first (see below). And I had a recent A1C reading showing pre-diabetes so there’s that new fun.

The psychological game of this disease has caused me to need medication – first med didn’t work at all, the second worked well but side effects with appetite were not helpful so on to a third – now this affects my heart rate too so I am off the first BP med to see if that helps with recent low BPs.

And then something is affecting my HR during workouts (butt dart med… cancer tumor hormones.. age…who knows??) I’ve started wearing a HR monitor to be able to see the readings in real time on my phone, instead of after a workout (my watch reading is too small without glasses). I’ve known how high I can get during workouts but thought it was ‘error’ due to the watch being my monitor – it’s on my wrist, how accurate is that? The first use of new monitor – my phone propped on the rig – let me see exactly what was going on and when. The look of concern from my coach was actually more worrying than the red numbers. This has turned workouts into an arcade game-like activity – can I keep my level in the blue or green? Oh crap in the red again!

I won’t even go into the new mouth guard I acquired from the dentist.

I don’t have much choice so I will continue to play this stupid game but THIS SUCKS!

I get a lot of standard responses from others when the topic of my cancer comes up. Things about being a warrior… inspiring to others… the meaning of life must be evident now… or maybe a new perspective on life? I’ve brought these up in previous posts here and there. These concepts are exhausting to me. I feel added pressure to have life figured out and be brave at all costs. What I have noticed – personally this experience has caused various shifts in my life, all related to my energy.

Shifting circles — There is a difference in who is around me now compared to before this diagnosis. I’ve heard others with cancer use the term ‘ghosting’ when discussing friends or family who disappear when they get sick. I don’t know if this is the case or not with friends I haven’t seen or heard from directly. I know people are busy with their own lives & issues. I notice the differences & don’t have any hard feelings about it but I also don’t put energy into caring. I work on maintaining the relationships I have now the best I can.

Shifting priorities — I used to value putting tons of energy into my job – in both careers it’s been important to me to do the best work possible. I still love my job but my time priorities have shifted. I make myself stop doing work at a more reasonable hour in the evening. I make it a point to stay a couple days ahead of the syllabus schedule instead of working in a panic the night before a class. In my free time I let myself try new hobbies, I actually kinda like cooking – who knew?

Shifting focus — I have limited energy now. I used to be able to juggle multiple tasks at the same time. Now I can’t. I have to use more energy to focus so I try to stick to doing one thing at a time. It’s harder to sit still and be productive. It’s actually making writing these posts more difficult. There is always work to be done or something else I can find to do instead of work on my head. I’m finding my job to be more tiring this semester for some reason. I have more in my head to get out here. I’ve reread this over several times, it’s not coming out – I’m too tired.

I started this post over 2 years ago and never finished it. I have come back to it many times but can never figure out exactly what should be here.

First of all I am struggling with the idea of gratitude. I don’t feel it… I don’t think. I’m expecting it to be something I’d get when everything is okay – like “phew, glad that’s done and I’m okay”. That’s not going to happen. Good scan results recently showing the radiation worked – still not feeling it. Medication to help with my depression & anxiety – still not feeling it (but feeling mentally more stable). A full year with no ER visits – still not feeling it. Currently only needing maintenance visits to the cancer center – still not feeling it. All things are pointing to me being able to do okay for now, for what could be a good amount of time – I “should” be grateful – anyhow…

I guess I can say there are people in my life I am grateful to have around me. I can’t imagine going through this without such tremendous support.

My husband – I cannot believe how lucky I am to have such a wonderful husband! He’s always been my strongest supporter, but especially amazing for these last years. During my treatment for breast cancer, a broken foot, & this surgery recovery, all my treatments and fun ER date nights, he has never complained about or hesitated in taking on more of the house & pet duties. He deals with my emotional outbursts and mood swings with amazing patience.

My son – The number of hurdles he has had to deal with in his young life and pursuit of a career is higher than most. Not only has he gone through all of the events noted above, but also our house fire at the start of his college years and then moving from his childhood home a few years ago. He continues to push on. I can’t be more proud of him.

My parents & sisters & their families & my in-laws – I have a wonderful family who have been there in so many ways and so many times – more than I can count or remember so I’ll just say how wonderful they all are!

My forever friends – 1 I’ve known since our toddler days, 1 from my first career and 1 from my second career. I am thankful to have you in my life (maybe grateful is a better description). The years of friendship and support and not shying away when things get messy.

This is where I get stuck with writing my thoughts. There are many others who could be added to this list, but I’d never be able to mention everyone. I am afraid to put this out there and have someone think I don’t appreciate or recognize their support. This is simply expressing my struggle to be grateful for a really crappy situation.