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?

What a year it’s been since my diagnosis 🙄 💩 🤬 I still remember waking up from what I expected to be a “simple” same-day surgery – & finding out it was so much more complicated.

I would much rather this journey be a slow ramble through woods on horseback with the occasional fence to jump instead of the crazy mini ups and big downs of this friggin’ roller coaster – this ride operator sucks! I feel like I’ve been robbed, my psyche has been altered. It continues to be more of a struggle than I expected to have at this point. Along with the recently added health issues, I can’t verbalize the chaos in my head, I try.

One of my big worries is the resentment I think I perceive from others when I do things to take care of myself. Example: I plan most of my days around working out – I see this as a necessity for so many reasons. But sometimes it’s at the expense of doing other things with my family or being more involved at work. People appear supportive, willing to let me slide with lower responsibility. But how much longer can I get away with this? Do they really not care when I leave meetings early? Or are they annoyed?

In my pre-cancer life I had always kept myself busy, usually taking on lots of things at one time. I’ve held positions in professional organizations & been a member on many committees. I used to be able to handle this added activity along with my actual job. Mentally I don’t feel capable of doing this now. I’ve really cut back on how much I am willing or able (not really sure which it is) to do beyond my job. When do I become dead wood to my co-workers?

I feel more on the outside of normal life than ever before. I’ve always felt like an outsider, this cancer has made the situation seem worse. Social situations are often stressful… I find myself pulling away from people so I don’t burden others or make them uncomfortable. How much do I actually explain when someone asks how I’m feeling? Should I just say ‘okay’ or go on and describe the newest event or symptom?

So much of my mental energy is spent fighting to not panic or assume the worst every time I have a weird feeling in my body. Often this anxiety accumulates over time and results with me crying at the drop of – almost anything. I think I’ve cried more in this last year than I have in my entire life combined. How much longer will friends and family put up with my over-the-top emotions?

I expected to be in more of a ‘maintenance’ phase with all of this by now. I hoped the most I’d need would be periodic scans to show my monthly butt darts were working. I didn’t expect heart issues, more medications or another stay in the hospital for a bowel blockage. My body doesn’t work quite the same as before. My GI tract is different, less predictable, especially in the morning. All these changes make it feel scary to plan for anything. All the ‘what ifs’ float around in any thoughts about the future. How do I go beyond just existing?

I have always hated being startled & react loudly if anyone or anything scares me (usually with adult language). I won’t go to haunted houses because of this, it has nothing to do with being afraid, but everything to do with my strong dislike of things jumping out at me. It’s the same with movies, I don’t watch scary movies. I don’t enjoy the anticipation of fear.

Ironically I also hate calm periods – I can’t relax when things are going smoothly. These are times I’m just expecting something to pop up. I can’t enjoy when I feel good, can’t relax when I have down time.

I feel like my life now is either the calm before a storm or a storm. I have to always be ready to deal with the next thing.

I haven’t been doing much writing here lately. Work took over – sorta – the need to stay ahead, stay on top of things… just in case something happens. I used to procrastinate more and always seemed to do better under time pressure. This past year has forced me to change my ways. I realized I can’t work like that anymore, not that it was a good idea then. But now I need to always be ahead = on guard. When it’s calm, it’s a much nicer way to work. But then the storm hits and I realize how unprepared I am even working ahead.

Before my surgery last spring I had time to plan ahead. I have wonderful coworkers who willingly stepped in to help me create plans and teach classes while I was going to be out on medical leave. I had time to record lectures and write exams for those weeks. I made lists, lots of lists, checked them against the syllabi to make sure everything was covered and the students wouldn’t miss out on any of the riveting information.

In fall I was able to stay ahead of my work all semester. It gave me a chance to try to relax some at night and even watch a little TV – not something I do often. I was also feeling physically stronger as the months passed. I was hoping to make it to my cancerversary with no drama. Then — STORM — Atrial fluttering and an ER visit in January, this along with the newly diagnosed high blood pressure. It occurred at a time I wasn’t teaching so I had wiggle room to deal with it and not mess up class schedules. Mentally I was devastated – another thing to monitor, another provider to keep up with, more appointments to add to my calendar.

At the beginning of spring semester I continued to stay ahead and made more plans to share information with others… just in case. My work files, usually stored in my own space, now in a shared drive so my TA could get to them… just in case. Other faculty added to my class lists in the course management system… just in case. I thought I had all bases covered and started to feel better physically from the cardiac issues.

Just a few weeks into the semester — STORM — Another trip to the ER – and a 3-night stay in the hospital for a small bowel blockage! [Another issue – which of my many providers do I call for this? Oncologist? PCP? GI? Surgeon?] Physically this sucked – GI pain started on a Sunday, ER on Wednesday & given an NG tube (ouch) to keep my stomach empty. NPO (nothing by mouth) until they determined the blockage unblocked itself. The blockage was caused by the scar tissue from my surgery last spring. I knew it was a possibility, didn’t think it would happen to me.

Mentally this was a really tough challenge! I didn’t make it to my cancerversary without drama. And I may have to deal with this again, nothing I do will cause it or prevent it. All I can do now is react (hopefully faster) when I’m surprised by the pain again. But now I also panic at any GI pain. I’m just sitting and waiting for the next time.

It also highlighted many more issues with my planning – I didn’t have time to figure things out ahead of time. There were problems to work out while I was in the hospital. Luckily I was able to do work from there? What happens if I am worse off next time and can’t help figure out how to cover my classes with no warning?

I don’t know how to prepare for the next STORM.

Years ago my exercise of choice was running, 3 to 5 days/week. I had a friend who would join me/us somewhat regularly. If we reversed our usual route, the run started with a pretty long hill. There was always debate about how long to walk up before we started “running”. One morning, after starting the upward direction, we passed two people coming down the hill. As we passed them she (running partner) called out “you have the easier direction” in an attempt to make a joke. That struck a chord (or is it cord? accord? ) with me back then. We didn’t know anything about them, how long they’d been out, how far they already walked or if they ran some earlier, are they capable of more or is walking the only option for them due to health issues???? I think about this every so often, now more than usual.

Now it has relevance to me personally. My body has been through a lot – physically – over the last 3 years. This has interfered with my CrossFit activity in lots of ways, and continues to do so. I have stopped/restarted from square 1 a couple times. This is not the first time I’ve brought this up but this week has been harder for me. I’ll come back to this in a sec…

I’ve had a couple scans scheduled this month, in addition to my usual monthly visits to the cancer center. One was a DEXA bone density to compare to my previous from 2 years ago. It’s also related to the medication I’m on hoping to prevent breast cancer recurrence, but it messes with bone density. So now I have osteopenia!! Because why not? I was getting kinda bored with just having cancer.

I also had an echocardiogram to see if my heart has any reason to give me concern beyond the atrial fluttering from last month. The ruling on one of my 3 health portals is ‘within normal limits’ not sure what that means. I still don’t have any idea what caused the fluttering and how the cardiologist plans to proceed – so another week of anxious waiting. And to top off the month will be my next CT scan to look at the tumors again – yay more barium and another IV hematoma!!! All this medical activity raises my anxiety level and I become hyper-reactive to emotions.

Okay back to the relevance of the comment… Because of what I’ve been through, my fitness level is not what it could be if I had these last 4 years to just work on improving. I am also older than most of the others in the box. This combination is a source of frustration for me. I can’t keep up… I try, but it’s not the way things are panning out.

I’m trying to change the focus of my workouts to place more importance on doing things well, not my scores. I am working on proper form when lifting, so I get the most benefit and reduce my chance of new injuries. And I’m really trying hard to focus on maintaining proper standards for movements, not my scores – to give myself a break. Yet, this still creeps in and smacks me in the head now and again. I still really enjoy the activities we do in WODs, my issue is the mentality of CrossFit.

I’ve never been a competitor-type person – loved riding horses, hated showing – loved running, hated racing. CrossFit is a sport, I get that. There is so much emphasis on besting scores, on speed, on “crushing it” with a majority of our group. Even if I wanted to, physically I can’t. Some days my ‘crushing it’ is simply completing a workout while remaining upright and breathing.

What bothers me the most are comments I hear from others, but not directed to me. I don’t know how to react when I hear stuff like “I’d love to use that silver bar” (when they see the lighter bar option being used somewhere else), “I have to use the baby weights” (when picking up a lighter dumbbell), explaining why they “have to scale today” (because they never do). This is often my norm and for me comments like this make it sound as if I don’t work as hard as they do because I did less reps or used less weight – i.e. my scores are not valid. It’s like I’m walking downhill while they are going up.

I’m sure the anxiety makes my perception a variation of reality. But I have to acknowledge where I am now. I’ve been pulling back a bit from talking to others after a WOD, from giving ‘fist bumps’ on others’ scores. Mentally it’s too much for me to see my score at the bottom – again – and to have minimal recognition for how hard I am really working. I feel very alone right now.

I’ll continue to aim for improvement, to work as hard as physically and mentally possible. I am trying to work within the 💩💩💩💩💩💩 normal limits handed to me. This is exhausting on so many levels.

Regular life things feel harder now…

Mentally I am exhausted. I feel like I don’t have the mental capacity to deal with much anymore. Often I can’t do more than one task before I give up and sit down to do a word puzzle or play a game on my iPad. I was good about staying a step or two ahead of my classes last semester. Right now, I’m very behind in planning for spring compared to other years.

So much of my ‘free’ time is spent scheduling or going to medical appointments. After surgery in April and the first few visits with my oncologist, I was starting to hope I could return to a new normal – monthly visits & shots and a scan every so often telling me all was stable. I was hoping by the 1-year mark I would start to feel a bit more relaxed about the situation. Based on this last month my new year is just as chaotic as the beginning of 2021 and not looking like there is calm coming yet.

I’ve always had a short fuse when dealing with things not going the way I hoped or expected. Usually it over dumb stuff like cursing when I can’t get a bottle open or bang my head on something. Sometimes it feels warranted but still probably seen as an overreaction to those around me. Ever since we’ve had greyhounds, I’ve been really trying (despite what my husband might say) to keep it down more. They tend to get overly scared when I yell. I have been noticing I’m reacting like this more often lately. I would owe a lot of money if we had a swear jar at home.

Now even small things feel super hard, like answering a text or an email, watering plants or just switching laundry to the dryer. Don’t even get me started with needing to fold and put away my clean clothes – I can’t handle this if I am the least bit tired. I used to love shopping, especially going to Target or Costco and just walk around to look at stuff, to pick up all those items ‘I forgot I needed’. I dread it now. I don’t like going unless there is someone else with me. It feels too mentally overwhelming to find things and deal with checking out after… even being the one driving there and back can be taxing.

Physically I am tired. I haven’t had a pain-free day in recent memory. My elbows hurt a lot, knees sometimes too, caused by one of my medications. It’s not degenerative, but really not fun. It’s often worse when I’ve been still, especially first thing in the morning or when I’m sitting in the recliner to watch TV. The monthly butt dart usually leaves a lump and a bruised feeling (can’t see it easily to verify an actual bruise). I’ve been nursing a shoulder pain for several months which has hindered me in the gym.

Now I’m on a blood thinner because of my ER episode. Every needle prick I get causes a lovely mini – hematoma. I feel like a rainbow-colored leaking pin cushion. I worry more now about getting injured, especially in the gym. I won’t try jumping on the box now for fear of skinning my shin. And with the cold dry air, I have a perpetual runny nose bleed.

Sleep has become just a series of naps through the night. I’m up every ~2 hours, often struggling to get back to sleep. No matter what position I put my body in, there is something uncomfortable or hurting. Lately I’ve been spending the better part of most nights sleeping on the couch. Sometimes it’s a comfort thing based on what’s hurting. Sometimes it’s just because I am tossing & turning so much I worry about messing with Peter’s sleep.

I just want to feel normal & whole again.

Whelp! Not even sure where to start with this one..

A few oncologist visits back my blood pressure was way high. For some reason it didn’t register with me at the time, but I panicked when I saw it on the portal site later. Since then it’s been staying high but these visits are the only time anyone checks it. My oncologist didn’t seem too concerned, chalked it up to anxiety from being in the office, but suggested I track it at home for a week or so. Kept staying high! The NP I see at my PCP confirmed my BP cuff is accurate and put me on a low dose of yet another medication.

The next day, before even getting a chance to start the new med, I woke up feeling not quite right. I was feeling my heart fluttering, but assumed it was anxiety from dealing with the new issue. I expected to burn off the anxiety in the gym, instead I got a completely wacky heart rate reading and kept needing to stop (more than usual). Taking a nap later didn’t help either. Finally using my watch ECG app – A-fib = YAY!!!

Off to the ER for a 14 hour visit. That experience is one I’ll really try not to ever repeat. Everything about that night was just so bizarre. Left there with a diagnosis of atrial fluttering and 2 more medications to fit into my daily routine – bringing the total up to 6! These new things also limit what pain and cold meds I can take.

Years ago – the first of these 6 meds was prescribed for my sluggish thyroid. I remember being very disheartened at the idea of needing a medicine for the rest of my life. I felt broken, like somehow I was less healthy, less hearty. This latest episode has really done a number on my psyche. I have never felt this physically meek, mentally it’s really messing with me. Exercising – my go-to for health & anxiety reduction, is now super scary. It’s not at all helpful. I keep watching my watch… what’s my heart rate? is that a flutter I feel? should I stop now or just hope i’m okay? NOW what do I do to cope with my crap?

And then there’s the new cardiologist to add to my provider list, to add to my schedule for visits, to remember to have other provider records sent to. Who do I call for what now? How do I keep track of who knows what?

There is a chance my monthly shot is causing the high blood pressure, but I can’t really give that up. If the BP medication doesn’t help, that will change my cancer treatment options. There is also a chance the cancer – the hormones the tumors produce are causing heart trouble – not a good outcome.

I AM SO FRIGGIN ANGRY! So very scared! Just so tired…I was really hoping for a year without any drama. Only made it 8 months. I just want to feel normal again, to not be terrified, not feel weak. I do not see the cardiologist visit as a one & done – it will likely lead to more tests, more appointments. How can I fit anymore into my schedule? – so tired of doctor visits and being jabbed with needles.