Events change things.

I’ve been through a bunch of changes I didn’t ask for during my adult life. Each time my life is altered somehow.

In 2004 I was laid off from a job at the zoo due to a huge $$ mis-handling by those from on high. For the 16 years prior, my plan was to retire from the zoo. My identity was tied to working there, my skill set was minimal because of my dedication to the job. I was ‘forced’ to change who I was and what I was going to be when I grew up. There were plenty of tears during this transition and I was not used to working that hard to get somewhere else. I adapted and found a career I love just as much as the zoo and now can’t imagine doing anything different.

In 2016 we had a house fire. The experience of the actual fire was one part – it showed me I could think on my feet in an emergency. But the re-homing of us and our dogs during the destruction & reconstruction of the house was another part. I developed anxiety like I’ve never experienced. My sense of safety was destroyed, life became scary. Things could change quickly. It took quite a bit of therapy to get my head to stop replaying the day and worrying about what might happen next.

Late 2018 into 2019 I was diagnosed with breast cancer and went through treatment (In the beginning). Once it was over I thought I’d be able to go back to ‘normal’ and continue where I left off. Mentally it took a toll on me more than I thought and I’ve been back in formal therapy ever since. These things were stories I expect to hear about from others… my friend just found out… my neighbor just had… not my own life events.

Now in 2021 this! I joke with a colleague about how I like to spice up my semesters (there was a broken foot in early 2020 to add to the spice) and she mentions how I like to keep things interesting. But this time there is no going back to what life was like before. There is no returning to normal. I am not okay with calling this a new normal, because it’s totally bonkers.

Having a chronic cancer is bizarre. I’ve read a lot of other patient stories, many refer this to a marathon. Supposedly the oldest living NET patient is 92, diagnosed 40 years ago. I keep trying to grab on to their positive thoughts, but these slip through my fingers and I’m back to the panic and fear. I’m sitting and waiting for the scary monster to jump out again.

I am realizing much of this is also mourning, I’m very sad for the loss of who I was, the security I thought I had. There is no going back to life before diagnosis, there is no getting to a new life after treatment.

My marathon has started except with treatments instead of water stations. The finish line won’t be a celebration.

I learned a new word. The closer I get to my upcoming CT scan the more I am feeling this. The scan will be a followup to the original PET scan I had. It will compare the tumors I carry around to what they looked like a couple months ago.

I continue with regular scans for breast cancer, alternating every 6 months between a mammogram and MRI. The MRI is as much a mental challenge as it is physical. It doesn’t hurt other than the IV line for the dye. But being in a tube for 20+ minutes is tough. If I move, they have to start over, I learned this the hard way. I honestly rely on the same mental stamina I’ve practiced in CrossFit (not trying to recruit but…). I can do hard things for 20+ minutes (sometimes the coach pushes me to be faster but usually I’m not).

I’ve gotten used to the anxiety before these scans, and the relief when they tell me everything is normal. The upcoming CT scan feels different. This time I know stuff is in there but the question = what’s it doing now? Did it grow, spread or maybe shrink? Is the medication working or do I have to go to plan B? What is plan B? How bad does barium taste?

Too many unknowns for my liking. I’m not able to just ‘go with the flow’ on this. I can’t just enjoy every moment, live life to the fullest each day, blah blah blah… regular activities & conversations are interrupted with thoughts of ‘what if’. I have not figured out how to get out of this rabbit hole. I am not even sure I’ve reached the bottom of the hole yet.

I’ve struggled with time management most of my adult life – but this diagnosis has upended any efforts I’ve made at keeping on tasks.

I am having a hard time maintaining focus on anything – it’s been difficult to get my classes ready for fall semester. My expectations of what I’d get done over the summer and what actually got done are completely not aligning – there is potential for a hot mess in the first week(s) of classes.

Adding to my focus fallout – my anxiety is increasing I think it’s because I have a follow-up scan next week.

This whole process feels like I’m sitting on a carnival ride I don’t want to be on, but my “friend” convinced me to try it (at this point they are no longer my friend). The freaked out anticipation — what’s going to happen to me, when will it start, how bad will it be, how long will it last?

and… my train of thought derailed…..

I started drafting thoughts for this post a couple weeks ago. This is one of the harder topics for me to put into words.

I feel like I’ve always had an angry side, a quick temper – it can flare up quickly & comes out sideways sometimes. My husband jokes about my potty mouth. And maybe the ONLY benefit to having a mask on during workouts – no one can decipher my workout words.

I am incredibly angry I have to deal with this crap! I feel totally overwhelmed most of the time. And I’m sure this stress is not doing my body any good but I really don’t have another option.

I found resources to learn more about NETs (neuroendocrine tumors) and have joined a couple online support groups with fellow NETs people. The process of understanding this cancer is going to be LONG and confusing.

The more I read the angrier I get. I already have multiple trips to the cancer center & multiple providers to keep records of appointments & treatments. Now I need to find a NETs specialist – none in DE so this is travel, this is more things to squeeze into a schedule.

The more I read the angrier I get. NETs present differently for everyone depending on the number of tumors, location, stage, grade, Ki-67 number… I can’t even use others’ experiences to guesstimate my future. I will need to get a medical degree to understand what I have and a really need an administrative assistant to keep track of when I go where for what.

The more I read the angrier I get. The symptoms of the tumor activity, the side effects of the treatments – all scary. I’m not experiencing them yet, to my knowledge. This will affect me though and I need to be aware of what they are. For example, I now have to worry about carcinoid syndrome & how normal things like dental procedures involving novocaine could trigger it. The sooner I catch a problem the more likely it will be to treat it, so I can’t not know what’s coming.

The more I read the angrier I get. Most of those with NETs are mis-diagnosed and don’t find out for a few years after being incorrectly treated for other things. I have no way to know but my suspicion is the non-ulcer dyspepsia (IBS like issues) I was diagnosed with several years ago probably was this starting up. NETs is unknown enough so most docs don’t even know to consider it.

The more I read the angrier I get. I’ve been told to not read and just wait for doctors to explain things. I don’t see this as an option. I need to know what questions to ask, when to ask, who to ask. But this leaves all the learning up to me.

How will I be remembered?

I started reading the obituaries back in grad school. It was mostly curiosity because at the time I was a dietetic intern and would recognize a name from my time in the hospital. It was interesting to see who they were before I met them.

Around this same time I received a call from one of my two college roommates. I had not heard from her in quite a few years. She was calling to tell me our third roommate had passed away from ovarian cancer and wanted me to hear it from her before I saw a post in the obits. About 2 months prior I had just reconnected with her via email and we were trying to plan to get together. But at that time she wasn’t feeling well and wanted to wait until she felt better. Reading her obit – I was amazed at all she had done since college and I was sad to have missed this chance to see her again.

I have continued to read at least the names of those listed in the obit section. Occasionally something about the person will prompt me to read the whole entry. I find the information people choose to include interesting.

Lately I’ve asked myself – what will mine say? Have I done anything notable? Is a lifetime of picking up 💩 an obit worthy skill? I don’t think I light up a room when ever I walk in. I know my RBF (resting bitch face) has convinced many students I am scary. I can be overly emotional. I’m worried I’ll be remembered as the whiny patient who couldn’t just suck it up and live life to the fullest.

For anyone who might read this, I am not writing this to ask for feedback. I just need to process who I am becoming now and what I’m doing in life. This diagnosis makes me ponder things I didn’t think I’d need to process for many more years.

I’ve always enjoyed classes or subjects dealing with numbers (math, science) way better than hard classes (English, history). Some numbers in my life…

Family: I am the oldest of 4 girls, there are 6 years between me and our youngest sister, there are 22 people in our immediate family, 12 are my parents’ grandkids. The oldest of our kids is 14 years older than the youngest. I was in the delivery room for 7 of the 12 births.

Scale: I started daily weighings way back in my zoo keeping life when I joined Weight Watchers. Back then, every 0.1 pound down was reason to celebrate. How I achieved the weight loss was not the most mentally or physically best practice but I was thin! I still weigh myself daily, but the focus has changed and as a Registered Dietitian my understanding of the number is more realistic. I don’t let the number affect my mood or define my self-worth anymore like it did “back in the day”. I don’t worry when the number goes up a bit. It’s more of a self-check for the day, a chance to remember to pay attention to how I’m feeling.

Scores: For each WOD (workout of the day) in CrossFit, we us an app to enter our scores. The score is usually a weight lifted or the number of reps completed and/or the time it took to complete a list of various exercises. When I started and for quite a while after, I would obsess about my score compared to everyone else. It affected my mood – good or bad. I kept trying to keep up with everyone in the class and never gave myself a break. On a few rare occasions I would not be the bottom score or I would Rx a WOD (complete it as written) instead of scaling weights or reps. But for most of my scores I am not very high in the list – still after 3+ years. After this latest surgery and my 3rd ‘restarting’ at CrossFit, I have been working on changing my focus. I won’t stop trying to improve and learn new skills. But now I’m trying to see my scores as a tribute to me and the fact that at my age I am doing well, even with this recent setback.

Statistics: I don’t remember everything I learned in my grad stats course but I do remember liking the course. I pay attention to stats like 1/8 women will be diagnosed with breast cancer in their lifetime, 2% of cancers are neuroendocrine tumors (NETs) like mine.

Blood values: Now I have more numbers to follow… monthly bloodwork to track how the well the medication is working. 1 – Cromogranin A is a tumor marker value. 2 – Serotonin which is produced by cells in the GI tract for everyone, but the NETs like to make more than necessary. Both of these are values to help approximate how active the tumors are in my body and show trends. Trending down is the goal or at least staying where they are now. I won’t get to WNL (within normal limits) but if the medication is working the numbers won’t go up to much from where they are now. 3 – CBC (complete blood count). I’m not sure what they are watching here but it’s lots of numbers. Some specific value in it, or maybe a couple values, are needed in order for me to be cleared for the giant needle. I saw someone refer to their monthly shot as a butt dart (hahahahaha – ouch!). This will be my new term too.

Waiting for the results of these tests every month causes quite a bit of anxiety. I check the portal daily until they are posted. I’m not sure what changes are okay and when to worry. There’s not enough to have trends yet and I’m due for a CT scan to look for changes in the tumors which will hopefully help me understand the blood values. My anxiety is reduced by workouts, but then my low WOD scores cause anxiety… makes my head ache..

2018: 🎄 Christmas Eve morning phone call: “we’ve got a cancer, can you come in at 11 today” – O’ Holy ****

I found the lump 2 weeks prior and went in to see my PCP about it, who sent me for a mammogram and an ultrasound. The radiologist reading my results suggested a surgical consult, who then scheduled a biopsy and voila!

I had my annual mammogram 5 months prior to this with nothing noted. The mammogram at this time looked exactly the same as the one from July, nothing changed? My lump was only seen on the ultrasound that day.

Surgery (lumpectomy) was 2 weeks later – clean margins and nothing spread to my lymph nodes. The cancer I had did not respond to chemo so I chose to go with radiation instead of further surgery/reconstruction. For 4 1/2 weeks I visited the hospital first thing in the morning on my way to work.

Genetic testing and this diagnosis puts me in the category of being watched very closely for any further trouble. I get to go in for the usual yearly mammograms (pictured above) with the addition of yearly MRIs. So every 6 months I’m going for some type of scan with semi-annual visits to the surgeon and my oncologist = lots of trips to Helen Graham Cancer Center!

Back then I was not regularly doing self-checks, this was randomly found in the shower. I put self-checks and flossing teeth in the same category – “yeah I know it’s important, I’ll start tomorrow..” Since this time I have been trying to get the message out about how important it is to know your own body (self-checks), & speak up when something doesn’t seem right. I think it’s also important to physically keep moving = exercise beyond normal daily activities. My fitness level helped me have an easier time dealing with & healing from this surgery.

Once I completed treatment I thought I was in the survivor category and could go on my merry way – in between visits to HGCC. Ummm – nope….. But one thing my oncologist stressed at my first follow-up after the NETs diagnosis was to make sure to continue screenings for the breast cancer issue. So now I have to keep track of both screening and treatment plans – I need an office assistant.

Neuroendocrine tumors (NETs) are sometimes referred to as the zebras of the cancers. The zebra analogy: If you heard hoof beats, your first thought would be horses as the most obvious source of the sound. But in the medical world, not all diagnoses are the most likely possibility. Sometimes it’s zebra hooves, a less likely diagnosis. Only 2% of the treated cancers are NETs.

I honestly can’t remember a time in my life where I felt like I comfortably fit in. I have always felt like an outsider in most of my life experiences. I do have great friends and the most wonderful family, but even in these groups I am on the outside a lot of times. This feeling has been something I have struggled with for as far back as I can recall.

This NETs diagnosis is stirring up the feeling more often. With NETs being a very uncommon type of cancer I don’t have a lot in common with the few cancer patients I’ve met up to this point. I’m hesitant to join a support group because I expect I’ll end up in another group I don’t fit into.

Now I also feel more separated from everyone in my life. My support system around me has no way to fully understand what I’m going through. I try to explain it as best I can, but I also worry about sounding like a whiny baby or broken record (might need to explain this metaphor to the youngerlings). So I tend to ‘err on the side of caution’ by limiting details when anyone asks questions.

The feeling of being an outsider and the reality of it might not be equal. But when my anxiety is high, any small indication of being an outsider triggers a supersized mental reaction. Today it sent me into a hour-long crying spell, and I’m unable to explain why. Sometimes the mental struggle keeps me from being able to engage in normal conversations. I am finding this part of my ‘journey’ very exhausting. I’m losing my ability to ‘fake it till you make it’.

I often struggle with an appropriate answer to ‘how are you?’. My go-to response is usually ‘I’m managing‘, or ‘hanging in‘, sometimes it’s just ‘I’m upright and breathing‘

A good friend sends DMs to check in on my every so often. A recent question of how am I feeling, & am I able to to get to the gym was the message this time. I told them I am able to work out, going in 5 times/week usually. I then added ‘mentally… riding the roller coaster’.

The response back commented how my physical activity probably keeps me [mentally] able to enjoy some roller coaster highs. I have been pondering this for a while. Honestly I don’t think I am experiencing any high points, just a few normal periods in between the lows. I cannot shake the sadness and anger for more than short periods of time.

Even when I’m feeling good I get reminded somehow of what’s likely to come. For example, the surgeon who did the bowel resection retired so my 3-month follow up was with another doctor in the practice. Because he is new to my case, he was asking me extra questions about my treatment and then asked if I am experiencing specific symptoms related to the cancer type I have. Luckily at this point I am not, physically I feel good. But I’m reminded of my likely future & now worrying about any progression of the tumors. I’ve mentioned before how every little internal pain sets off a small panic button in my head. On a positive note – the periodic pain I’ve had is not a hernia!

I don’t like it here in the place I am in right now, but I haven’t gotten to a point of being able to climb out. I’ll continue to ride the coaster and maybe find high points. Until then, anyone asking how I am will probably get one of my usual replies.

I’ve taken care of animals since I was 13 starting with horses. I worked at the horse barn, a dog kennel, UD farm (while I got my BS in Animal Science) leading to my first career as a zookeeper. I joke about the huge amount of 💩 I’ve picked up in my life.

In our married life we’ve always had pets, we had up to 5 animals in the house at one time (3 cats, 2 dogs). In the last year or so we’ve had a few discussions about the 2 remaining dogs being our last pets. We’re not in a rush to be pet-less but we’d like to experience not having the responsibility of finding care for trips, getting home in time to let them out, and picking up 💩.

Very recently we had to say our goodbyes to Daisy, leaving us with our now only dog Otto. This decision was not easy, and very hard to follow through on. I’m grateful we had the ability to make the decision before it became an emergency.

The sadness I’m feeling at losing her is intertwined with fear in the reality of my uncertain future. I don’t know if I’ll be around to deal with outcomes of decisions being made now. Will I even get to experience the freedom of not having pets?

We’ve camped several times in the past, usually tent camping with a bath house nearby. I have always wanted to retire and spend our time traveling in a small’ish RV. We spent 4 days camping in a cabin last week as a gift from For Pete’s Sake (another post to come on this). Many of the sites were filled with seasonal rentals of various sized trailers or campers. It was fun to see them and talk about what we liked or didn’t based on what we could see on the outside. But many times while walking or driving around I was wondering if this was our future now.

It feels harder now to know how to plan for our future.