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.

I’ve mentioned before how this experience is a roller coaster – emotionally it is draining. The highs are not very. The lows can be low but mostly short-lived. When I get in those ditches it usually takes a couple days and a really good cry to get out. During that time I have a hard time with adulting. I have a low tolerance for the small stuff and my filter gets turned off… so I avoid people the best I can. Any energy I have goes into only what I absolutely have to do.

I’m climbing out of the deepest ditch I’ve encountered so far. This was the darkest I’ve felt since diagnosis. I have no idea why so deep, which makes it even scarier. It lasted longer than any other down time. And for a while I couldn’t get out even with lots and lots of crying.

I have started using medication to help me sleep. Most of the time it works, at least to help get to sleep (sleep is a whole separate issue and probably needs a post at some point). One night, the middle of this darkness, I actually gave some thought to taking extra medication, beyond the recommendation. I just wanted to sleep, to get away from the sadness. That thought scared me.

I kept that thought to myself for a couple days. I kept to myself for most everything else too. I didn’t have the energy to reach out to anyone. It was easier to hide.

My usual ‘go-to’ for feeling better – exercise – wasn’t as helpful but I kept going. I didn’t talk to anyone in the gym unless they spoke first. I didn’t stick around more than I needed to.

I enjoy being with the students and being in class has helped me in past downs. This time – I could pull myself together when teaching, but went right back to dark after classes were over.

I’ve been in dark places at various times during my life. I’ve never considered any form of self-harm as a solution. I don’t see it as a way out now either. But the darkness of the past week (+/-) gave me a glimpse of how that road gets chosen.

It’s been very lonely & scary. I’m not completely out yet but getting there. I’m exhausted. I am afraid of the next dark.

Most of my adult life I haven’t given much thought to the end. I know there’s no way to avoid it at some point. But it was always really far away. Now it’s tucked away in almost every thought or decision.

I was always going to be the one to take care of everyone else. I’m the big sister, the oldest, so I should be the one to look out for my younger sisters, my parents as they age & my own family. I never thought I’d be the one needing the care, and definitely not at this point in my life.

Everything feels scary now. There are the ever present random symptoms – what are they from and why are they happening? Will they land me in the hospital again?

I’m scared because the first treatment stopped being enough to keep the tumors quiet sooner than I had hoped. I have no idea how active these things are now. What are they doing to my insides?

I’m scared because another treatment started. This has a good chance of damaging the tumors enough & give me a longer time until I need further intervention. How much longer is the question. But I’m scared of the possibility of experiencing damaging side effects from the treatment.

I’m scared to find out how much any of this is going to continue to impact my life. What future disruptions will I be dealing with, how do I plan ahead? What symptoms will I be struggling with next?

I’m scared because I am having stamina issues with workouts. I already couldn’t keep up very well, now it seems worse. I know my body has been and continues to go through a lot. Will this always be the case from now on? Is this the best I’ll feel going forward? Is it downhill now?

I’m sorry, I’m trying to keep it together. Some days it’s easy, no triggers, just normal events. Other days seem super hard to maintain any adult-like disposition.

I work very hard to monitor myself and stay aware of my moods. My goal is to not blow up at people – especially for things I can’t control or they had absolutely nothing to do with. I also don’t want those around me to think my mood is because of them. It is usually just my inability to deal with life at the moment.

I’ve been struggling these last few days to mentally stay afloat. I don’t know what started this or what is actually bothering me emotionally. That’s the worst part about this, most of the time I have no idea what is triggering me.

I’m trying to ‘stay strong’ – what ever the hell that means. I worry how my outbursts affect my husband and son. My husband gets the brunt of this, and often worries he did something wrong, or there is something he can do to fix the problem. I feel horrible when he makes these assumptions. I know my son is affected by a lot of what happens to me. He told me he doesn’t want to know more than he needs to because it distracts him from school. He already has enough to work through to get classes done. This can become an ‘eggshell dance’ at home – no one wants to set me off, including me.

I’m trying to ‘find gratitude’ – it’s not there for me. I don’t ‘appreciate life more now’ than I did before. I’m not ‘grateful for every day’ I’m alive. The emotional toll is suffocating at times.

I had a dream a couple nights ago… there was some sort of presence in my room, I’m not sure exactly what it was. I tried yelling out to my husband but couldn’t make any sounds (I hate these types of dreams) & woke up super scared. This is what I feel like while awake – a presence I can’t shake, and no amount of yelling will make it go away.

I’m really trying… it’s frustrating how unsuccessful I feel at existing now.

I’m exhausted from dealing with me!

I’m tired of being triggered so easily. For example, a virtual conference meditation activity asked us to imagine walking to our future selves – 20 years into the future. The purpose was looking to that future self as a mentor, asking yourself what you need to know now. My only thought was IF I’m actually going to make it 20 years, do I have a future self to ask? Instead of being relaxed and using this as positive motivation, I ended up in tears.

I can get triggered by daily things like music. My husband has music playing almost all the time in our house. Most of his eclectic mix I enjoy, sometimes I just tolerate it and every so often I ask him to change it or use headphones. Lots of the music triggers memories of the past – where were we in our lives when this song or band was popular? Now I get in my head – think back to those times about how much less I had to worry about, how comparably easy life seemed then… tears again. Even the random mood music he finds – I’ve never heard it before, no memories to go back to. But it frequently triggers sadness instead of the calming effect it has on him. Songs that used to inspire me during workouts have become harder to use for that purpose – they are from a BC (before cancer) time.

I am surrounded by my wonderful family & good friends. I have many people reaching out asking me how I’m doing & if they can do anything. Despite this I feel very lonely most of the time. Just having someone around or making plans to go do something together would be fantastic. But based on my own exhaustion from dealing with me and my triggers, I can’t imagine my company is pleasant for anyone else.

Everyone is super busy with their lives – life is busy. It’s hard to coordinate schedules, to find a mutual time when both sides have a free minute or evening. And I hesitate to be the one who reaches out to see if anyone wants to do something. I can’t guarantee I’ll be the best company at the agreed upon time. I don’t want to put anyone through the experience of me randomly breaking down yet again.

I started writing this post back in April, and sat on it because I thought I wanted to list more of the trigger examples. I just read it again and decided writing that list would take forever. The triggers still come and go, sometimes frequently, sometimes there are longer times in between. I’m learning to recognize them sooner and working on ways to lessen their effect. Sometimes deep breathing helps but if it gets to far to fast my go-to move is to hide & cry. I am still exhausted.

Fisher, our first greyhound, figured out the benefit of shade on walks. Having black fur meant he’d get hot quickly in the sun. He had a pattern of trotting to the next shade he saw on the walk and then walk super slow while in the shade.

I walk to campus most days, either for a workout or for work or both. With the summer starting, and the new treatment I’m on, I’m supposed to avoid the sun and I don’t tolerate heat as well as I used to. The other day I found myself using Fisher’s technique – looking for the most shaded path home – NO I didn’t trot. These walks give me lots of time to think/dwell on life.

One way to avoid dealing with things is to not deal. Not writing in the blog is one way to ignore reality. If I don’t sit down to write out what’s in my head it doesn’t exist and I can pretend everything is normal…. until I am forced to face it – again. Chasing the shade was one of these moments.

I spent the last month+ trying to focus on work, to feel useful at my job, to pretend I don’t need help and I can handle everything like before. I’m trying to ignore the side effects of the new oral chemo treatment, added in May to my existing plan. It’s meant to hold me over until the real second treatment – radiation – can be started.

But… I’m finding the need to adjust many of my daily activities – chasing the shade of the day. I have to think ahead more, plan my day not only on calendar events but what I feel I can tolerate. I have to look for the most comfortable path based on what ever fun side effects are jumping out at me.

Digestion has changed, so I have to plan differently for early morning events. Friends and the coach are starting to be surprised when I show up on time for a morning workout. Depending on what & how much I’ve eaten during the day can also affect how I feel at night. But I don’t know what exactly is causing the discomfort – I’m not seeing patterns yet.

Taste changes make eating less fun. Many foods taste funny or seem to be missing something if I’m familiar with them. Trying new foods is pointless, I have no idea if I like it because I know it doesn’t taste how I taste it.

Hot flashes have me altering how I dress and affect my comfort in some situations. I can’t just wear something based on the expected temperature, I need layers. Hot flash tip: solid colored tops show the sweat more – I have to choose my shirts carefully.

There is no way to know if the these issues are from the cancer or the treatments. Some of these issues might be temporary and go away when I am off the chemo and start the radiation. However I fully expect the shade to shift again with the new treatment. I’m thinking this will be a constant way of dealing with life from now on. So then I’m left with the decision – do I suck it up = just ignore what’s going on = keep quiet? Or do I say something = complain — while I try to adjust to each new shift?