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.

Tired of being different ~~ I want to be a normal aging person with normal aging issues.

Tired of being unique ~~ My retinal specialist called me unique at my recent visit, when asking how I was doing. She even joked about no one wanting to be unique in medical visits. Luckily for her visit everything was normal, except both eyes being dilated for most of the day.

Tired of the daily reminders ~~ Weeks like this have more of these reminders. Starting with funky eyes this morning & needing to be driven around because of the brightness outside. This routine followup for freckles on my left retina, checking for changes, just another weird thing in my body needing monitoring. And then I had the pleasure of drinking barium for a CT scan in the middle of class – big ICK! Ending my day with the scan and not eating dinner until late. Later this week there is a cardiologist visit and the monthly routine bloodwork.

Tired of having to re-explain medical status, medication use, and recent treatment plans ~~ Every care provider besides my oncologist asks me tell them how the cancer was found, what the treatment is, what medications I take now (all 3 gazillion of them). Most have never heard of Neuroendocrine tumors, or Octreotide, or know anything about the Lutathera (PRRT) radiation I had. Most don’t know if my medications affect whatever it is I am seeing them for. I spend a lot of time explaining how they work as best I can.

Tired of so many appointments ~~ I have 10 different medical specialists, 5 different patient portals and way too many visits to keep track of. I have to keep everything in a separate spiral-bound calendar – as my backup to the family calendar online. As much as I tell people to speak up if something isn’t right, this keeps me from bringing up any new issues. I don’t want to deal with more stuff.

So tired ~~

…disposition to or an act or instance of kindness, courtesy, or clemency

I am struggling to give myself grace. Today I cannot accept where I am & what I’ve gone through this last year.

Passing my 2nd cancerversary a couple weeks ago and looking back at how this past year was just as crazy if not more so than the first year. Two small bowel blockages with 3-4 night stays in the hospital + 4 radiation treatments each with day-long stays. My body has been through the wringer and is still trying to recover somewhat. I have been working on accepting I will probably never get back to where I was before surgery.

Workouts like today make this issue kinda slap me in the face. I was the slowest by far compared to all others who did this workout. I expected to be slower than even this 30 minutes when I saw the times posted by early risers. Coaching instructions are another issue – often timing expectations are not realistic for me – for some things –> therefore = failure – before I even start. I put this on myself, it’s never said to me as such. This is where I need to give myself grace.

The physical nature of this cancer, the toll of it and the treatments will always affect many parts of my life. The physical side effects of meds and treatments are not something I have really expressed here. For some reason I don’t tell very many people about them. I just adjust to them as best I can as they occur.

Exercise has become very important to combat many of these issues. I still continue to show up 5 days/week and do what I can. It’s sooooooo frustrating to always be last. But really… the comparison to others in the room is not fair to me – again, can’t give myself grace. I would like to be able to acknowledge my accomplishing this workout without comparing my time to everyone else. This was hard, but I finished it. I had to scale the wallball weight and I still can’t do dubs – so 400 single jump rope jumps it was. But I did all the amounts listed — why is that not good enough to me? My head needs to be quiet and give grace.

I haven’t written here in quite some time for lots of reasons. Fall semester was exhausting. It took all my energy to keep up with my classes because of changing textbooks and updating course materials. I also went through 4 cycles of radiation (PRRT) between August and February. I had no way to focus on much else besides work and surviving.

As more time passed between my last post and considering coming back to this, the more I can’t decide what to write about next or if I should at all. I feel like much of what I have to say is rehashing the same post topics as already written. Today I decided to just put something here and see what comes out. I think I might skip the usual re-reading a post and editing to get it just right (except typos maybe?).

Isolation – this feeling follows me almost all the time. It’s like a shadow I can’t shake. I don’t understand why, with all the great people around me and tons of support I get, it is still there, lingering, poking me, reminding me it hasn’t gone away. I feel set apart from others, on the sidelines while everyone else goes about their day. The things I can’t or won’t participate in feels like it keeps getting longer.

I feel lonely quite often. But I hesitate or avoid being the instigator for any interaction with others. I don’t want to be a bother, don’t want to interfere with their lives. It takes a lot of energy to keep up with friendships. I don’t want to be the one making the plans because when they fall through I am the one who started the process, no matter who cancelled. I have to work really hard in my head to not take this personally. It’s easier to just avoid the situation or wait for someone else to reach out.

This is not a new feeling, I’ve felt on the outskirts pretty much most of my life. But this diagnosis and the issues I have to deal with now make it more obvious to me. I’m not sure what I do with these thoughts now, more pondering is needed, stay tuned…

Over the last month+ I’ve been raising money for a NETs organization – to help them help those of us with NETs in a bunch of different ways. Friends and family have been sponsoring me in a ‘virtual’ walk. Even though the organization identified a date, the idea is to hold a walk at any time. Last year I raised money but didn’t officially walk – other than our usual daily walks to work or with the dog.

This year I decided to try and organize an actual walk. The problem is – I am not a good organizer, I don’t enjoy planning activities like this. This is why we don’t entertain at our house much. I wish I had it in me to be a better host. It has always felt difficult to plan things, but even more so now. I don’t have a lot of extra mental energy.

Goal: to be low-key – here is the information… come join if you want… totally up to you… no pressure. I didn’t ask for any RSVPs – told friends and family it could be a game-day decision.

I also needed to keep the pressure on me as low as possible. I ordered a cake, & plates & cutlery to bring. I asked a friend to get coffee in a box and invited others to bring a snack if they wanted to share something. That’s it, that’s all I could muster.

The weather turned out to be super cold – blustery and not pleasant to be out in for any length of time. I felt awful for asking people to be outside. I had a hard time getting past this for most of the walk. I spent a lot of the walk just looking around at the friends and family who were with me, actively supporting me in the cold, grateful for them in my life.

But I couldn’t stop being so angry about all this. I don’t want to need this support! This thought crept in even before we left the house and clouded the whole afternoon for me. I don’t want to feel so needy.

And the pressure came on anyway, despite my efforts. I was worried about everyones’ comfort. I wasn’t sure who to talk to, who to walk with, how to even get the walk started. I felt a bit of disbelief that others would do this with me, for me. Even after all this time the whole situation often feels surreal.