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.

I get bored with some things pretty easily. — I change my hairstyle on a somewhat regular basis. Luckily I’ve been with a great hair stylist for over 25 years & he’s always up for trying something new. — One of the best parts (IMO)of CrossFit is the wide variety of workouts & there’s always something to improve or practice. I have not been bored with workouts in the last 4 years. I did find many of the other forms of exercise I’ve done in the past a bit too repetitive after a period of time. — Even with my former job as a zookeeper, the routine of the day eventually soured me on the job itself. As much as I loved working with animals, it lost its appeal.

Then there are the other times I am mad at interruptions = forced changes. I have been eating the same thing for breakfast for many years. I’m not even sure how I started with this, but it’s what I like better than other options. After our house fire we were re-homed in a townhouse while our real house underwent renovations. We had sufficient but minimal cooking equipment in that kitchen, but wasn’t enough for me to make my breakfast. {yes, I realize this is a super minor problem in the grand scheme of life.} This was when I realized how much I liked my usual breakfast and for those months I had to tolerate other things.

For both cancer surgeries and my broken foot I’ve had to change my routines at home and the gym. Each situation was different but had similar frustrations. Normal routines like showering, cooking, my ability to help with dog care, and even driving were disrupted. Activities of daily living (ADL) were much harder or not possible. Now I try to remember those times just to appreciate being able to move and do normal things… simple things… like walking to campus for work or the gym.

But… always a but… now I’m super scared of the changes & interruptions to come because of my NETs or treatment. I’ve mentioned before how much I rely on my workouts, not only to maintain my strength and health but mentally I need the distraction. It forces me to only think about surviving the WOD. I can forget about everything else while I’m in the gym.

One of my many medications (don’t remember which one) can cause joint pain. Supposedly this is just pain, not deterioration, so I’ve been pushing through ongoing shoulder pain for a couple weeks. For the last week+ I’ve been having elbow and knee pains too. It’s rare to move my arms without flinching first. I’ve avoided mentioning this to almost everyone because then it’s real. I’ve been using the open gym time for extended warmups help get through the WODs. Another medication can cause heart issues by thickening walls. No idea what this would feel like if it happens, my hope is to avoid it by keeping in shape. And I won’t rehash here what I’d face with tumor growth.

I’m not sure if it’s possible to avoid these things or if they are inevitable. Will these be interruptions or forced changes? Every new ache, new body sensation causes angst because if something goes wrong again, what do I do? It’s hard to get this out of my head when I experience any discomfort. When it happens during a workout – my time to forget things – $*** hits the fan in my brain. My coping skills at these times need work, I’ll leave it at that.

How will I deal with being ‘kicked out’ of the normal gym routine again? Our coach: “as long as you come back more times than you get kicked out, you’re good”. Will it be possible to come back next time?

Going concern assumption = a business is expected to function as if it will continue to operate indefinitely. It should be able to remain active without the need to close and sell everything. The business owner determines whether the business is able to continue in the foreseeable future. This affects the accounting methods used by the business. I (very) briefly cover this idea in one lecture of one class.

For some reason this concept came to mind during my appointment with the NET specialist. First – what I heard from the NET specialist:

• The monthly shots are doing what is hoped for, they are keeping the tumors from growing.  What I learned is this medication typically only works for a year or two before a new treatment is needed. That will be determined by the activity seen in the scans. I could be lucky and have the medication work longer than the norm.
• There are other treatments available, but not yet, since the shots are working.  They will probably have more side effects.  Some of these may require treatment at a different facility, if my current oncologist doesn’t provide it. At least I have options?
• I am not a candidate for clinical trials due to my ‘recent’ breast cancer.  I might be in a couple more years, further out from that first cancer.
• The tumors they watch on the scans are only the places where they are large enough to show up. There are other spots not big enough to pick up the contrast, seen at the time of surgery.  She mentioned these as being a potential problem.  The extent and location of these could be what cause issues in my GI tract at some point.
• The outlook for my future is not as rosy as I was thinking.  I was planning on a few decades but it sounded to me like that is unlikely based on norms.  Nothing is imminent but this will continue to progress, the goal is to keep it as slow as possible.  I am really hoping my abnormalness is an asset here.
• For now I plan to stay with my current oncologist and only plan to see the NET specialist as needed. 

So now what? I didn’t ask directly how much time I have left – even with her expertise this form of cancer is so hard to predict. I also didn’t really want to hear an answer. But I did ask about how safe is it to make plans for the future, like trips. She said go ahead and plan, and have a backup plan for making cancellations, but don’t stop planning things.

This triggered the going concern principle idea in my head. Before this surgery and diagnosis, I was all in for continuing with life ‘indefinitely’ (or at least lots and lots more years). That idea is no longer valid but I need to find a way to expect to keep going, whether or not I do. I need to figure out how to get past the fear of what’s to come. I am terrified of what may come my way because of the disease progression. I am sad and scared for so many reasons. Right now I am doing all I can to remain as healthy as I can. It’s more of a preemptive strike but that’s all I have to hang on to.

FYI – NETs (neuroendocrine tumors) information:

• NETs are an uncommon cancer type forming in neuroendocrine cells. These cells are part of many organs (e.g. GI tract, liver, lungs, ovaries…to name a few) and carry messages from the nervous system to the endocrine system. The endocrine system controls body functions by making and releasing hormones in response to these signals. (This has been your brief anatomy & physiology lesson)
• Over 90% of NETs patients are mis-diagnosed and treated for incorrect diseases, usually things like Irritable Bowel Syndrome (IBS), Crohn’s Disease, gastritis or anxiety (like me!)
• Correct diagnosis can take up to 5 years from the time symptoms start (like me!)
• Many physicians are not aware of NETs or treat them as benign and unable to metastasize. Over 50% of patients have metastasis = spreading at diagnosis (like me!)

My struggle to keep up feels overwhelming a lot now. The usual work:life balance is harder to manage with the life side needing so much more attention. I’ve never been the best at time management, especially for work things. This semester I amy trying to stay ahead of things for work… just in case. But I find myself having a harder time staying focused enough to get work completed. I’m even having an issue just getting these thoughts out now.

In the life side of the balance, I still need to do the usual stuff (e.g. exercise, eat, shower, laundry, yard work, dog walks….) But this cancer has forced me to add keeping up with multiple medical appointments in my spare time. I now have 4 different portals from providers to manage. I get oodles of texts about upcoming my appointments. Just from the lab for my monthly blood draw I get 4 separate texts when I schedule a time to come in. Why 4? Then there are the emails with notifications about updates to a portal. And the bazillion pre-check emails or texts for each visit to make sure I don’t have covid symptoms.

In the next 3 months I have 2 screenings, 3 medical provider appointments and 2 shots in my already in my calendar. What has yet to be scheduled are at least 2 shots and another visit with the oncologist to review one of the screenings. Oh and there is a dentist visit in the mix I forgot about. AND also the paperwork or online forms – This is what kept me dragging my foot in the search for a NET specialist. I didn’t want to deal with the paperwork and scheduling yet another appointment with yet another doctor.

There are frequent deer visits in the woods behind our house. With the leaves coming off the trees, I can see them more easily. Recently there was a lone deer with a gimpy back leg. My first thought – call the vet – [then she realized she wasn’t at the zoo and no vet to help]. My next thought was how much I felt like the deer. Physically I’m not 100%, I have issues now and likely potential issues at some point in the future. The deer has no choice, deal with the leg as best she can until she can’t. She just made her way through the woods. She can choose the direction to walk but still has to deal with the leg. I don’t get a choice either. I will likely have options with what direction to take the treatment. But like her I just keep trying to keep up.

.

So far my recoveries from surgeries have not had any huge complications. This most recent surgery in April took the longest to get back to what feels like normal – not really normal but the closest to what it was like before surgery. My rehab was just making my way back to the gym and slowly getting back into regular workouts. Sometimes my head didn’t have the patience my body needed. But the threat of getting hurt by progressing too fast was enough to keep me in check. The thought of developing a hernia and needing another surgery was my biggest fear. I absolutely dread being a patient in the hospital again.

It feels like my entire life now is a prehab situation. Everything I do is in preparation for the next event. I’ve mentioned how important physical activity is in my opinion. My primary reason for doing any exercise used to be getting strong and kinda sorta toned. Now it has turned into a need to be ready to recover again, or deal with side effects of the cancer or treatments.

I don’t have any idea what being ready actually means. It’s not reaching a particular goal of a weight I can lift or how fast I can row. But this need to be strong enough to recover or survive has started to take away my joy of working out. It also causes me more stress when I am temporarily injured. I tweaked my shoulder last week and I’ve been altering movements and whole workouts all week to give it time to heal. Mentally this has resulted in more anxiety because how am I supposed to keep up with getting ready? My plan to not get injured is not working.

I am trying to figure out how to bring the enjoyment back into my workouts. But the prehab thoughts still dominate my headspace. I feel like it’s just a matter of time… not if… but when.

I started my adulting as a zookeeper after college. It was a great gig for an introvert who loved animals. I loved the job and the people I worked with while I was there. I planned to retire from the zoo. But best laid plans… I ended up getting laid off from zoo after 16 years because those above me couldn’t manage money properly.

This forced me into a career change – but with no transferable skills. I had dug myself into a hole. So I did what I needed to do for my future career. Within 2 months I was accepted into the grad program at UD. And after 5 years of blood (not really – just being dramatic here), sweat & tears (lots of them), I found myself with a new path and more potential doors to use. Now I am in a job I love just as much, if not more than the zoo.

While the decision to leave the zoo was not mine to make, the direction of my life was. I could have chosen an easier path or settled for the first job I could get with no skills. I’ve always been proud of how I handled this transition.

Since my surgery and diagnosis I have received a lot of compliments on how well I am handling this situation. Many of them are similar to what I heard during my career switch… doing a great job… you are so strong… so proud of you… impressed by how you’re dealing with all this. I appreciate these thoughts and I know they are coming from a good place. I don’t want to sound ungrateful for the support but…

The thing is, this is completely different for me. This time it’s not that I’m doing what I want, it’s what I need, it’s not a choice. I don’t feel like a beast, warrior, or fighter. I’m scared s***less all the time. I am only doing what I can to protect myself. I am working hard to get in the best physical shape I can – knowing I will likely need to rely on my strength yet again at some point in the future. I don’t really feel like going to get monthly blood work or my butt dart medication, but I have to. I don’t want to need my therapist as much as I do (this is also protection for those in close proximity to me). I don’t want to go through the process to find a NETs specialist, but it is another step in this crazy new existence.

This is not a battle with cancer, battles are choices with a winner & loser. This is just my best attempt to stay alive for a while longer. This is just me in survival mode.