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.

I started this blog as a way to put my thoughts down instead of just letting them swirl in my head. I’ve been in formal therapy for 2 years, starting soon after my breast cancer treatment. Lately we’ve been talking about other things I could do to help me now. One idea was a punching bag when I am having a bad day/hour/5-minutes – but I get the same effect with more fun in CrossFit. I was going to start a journal in a book, when my husband suggested this format. So I’m learning something new while processing my 💩.

I decided to make this public to let others around me know where I am in all this. I can’t keep track of who knows what anymore as far as facts about my illness. Also – I struggle with an appropriate answer to “how are you doing?”. So I figured this might be the easiest way to update anyone interested. I don’t have any expectations about who is interested or how often it’s viewed.

When I first sent out the link via text, one of my dearest friends (30+ years) responded with “… you beat me to the punch. I was going to ask if I could write an article about your journey [for an undetermined publication]. I think you will be very inspiring to others.” Her interest in me/my story meant a lot to me, but it was par for the course – we’ve been through lots of tough stuff together! I told her I’m not out to inspire and this is as published as I’m planning right now.

When I put the link in my Facebook post, I received many positive responses from great friends. I am super grateful for all this support. I am not trying to discount it, I know it comes from a good place. But I struggle with the idea of being ‘inspiring’. I am not sure what I am inspiring anyone to do?

For me, the idea of being an inspiration feels like pressure – I had/have to be ‘okay’ during my first cancer, after that treatment, and now during again. I feel like I’m expected to now have figured out the meaning of life, how to appreciate every moment, live life to the fullest. Honestly I’m just trying to survive. I just go from blood test/shot to blood test/shot, hoping my numbers stay put or drop. Then throw in scans every so often – what will they show, did the cancer spread, grow or shrink? I also have to keep up on the breast cancer screenings = more scans. There is lots of anxiety leading up to these events.

I am not brave, most days I am scared about my future. I don’t have a choice here, I didn’t pick this direction for my life. I pretty much have to ‘keep going’ because the only other option is dying. I am just doing what I can to stay as healthy as I can for as long as possible.

When I look at lists for how to reduce cancer risk I get really angry. – Exercise ✅ – Eat healthy ✅ (okay maybe its the chocolate and coffee?) – Don’t drink alcohol ✅ – gave that up ~30 years ago for completely separate reasons – Don’t smoke ✅ – Maintain a healthy weight ✅ (sorta) – Use sunscreen (probably need to do this more often). So I have done pretty much everything on those lists and got hit with cancer 2X!

I have been trying to sort out the anger in my head. I get it – life isn’t fair – & no one should have to go through this crap. I am not in a place where I want to stop & smell the roses, appreciate every moment, live life to the fullest every day, blah blah blah!

Right now I have no symptoms, no side effects from the medication – I am grateful for this. However every day I face the reality – there is no escaping this. I have a long scar down the lower half of my stomach. Every time I shower or change clothes it’s right there to remind me. Three months later I still have to watch what clothes I wear &/or how I sit for longer periods of time, just because of the scar.

Every pain I have internally now causes my brain to yell “WTF is that?” Is it just my age? What did I do recently in CrossFit? Is it a tumor acting up? Do I have a hernia? Is it a new surprise? It’s a new fear, I don’t feel safe anymore. I’m now just waiting for the next shoe to drop, there is no relaxing from this worry for me. I did everything to stay healthy, it didn’t work.

And the surgery put me into instant menopause! I have hot flashes now which are way super fun in workouts! My breast cancer medication changed because of the menopause and now I get to worry about my bone density more than before.

Every month I get my shot, in my butt with a ginormous needle. This is in the treatment room with many others who are getting their chemo. This is an uncomfortable experience for me. I feel awful for each of them, I have no idea what they are going through. I am only there for a short time compared to them but I won’t be done. I won’t have the side effects, but I won’t be done. None of us can bring in a support person (F*** covid).

I’m the oldest of 4 girls, I was supposed to be the one to help them, help our parents. I was keeping up with my health habits to be able to be around for everyone. This totally sucks – I am so angry, so emotionally drained.

/pōm/ (noun) – fruit consisting of a fleshy enlarged receptacle and a tough central core containing the seeds

I have a super wonderful friend who I have known for almost 53 years. I don’t get to see her enough in person, but I know I can always count on her to be available for me. When she’s in town we make time to meet and go for a long walk while catching up. Phone calls are usually in between visits.

A couple weeks ago was the first walk we had after my surgery and cancer diagnosis. Near the end of our visit I started explaining some of the mental challenges I am having with all of this. One of the hardest for me is the fact this cancer will never be gone, just hoping for long-term control (do I get to..?).

Two days later, while she was in the airport waiting to go home she sent me the most wonderful text: “…I was thinking about you and the anxiety around chronic, long term cancer. Not sure if it helps but I’m going to think of you like a beautiful, sweet, perfect apple whose flesh is healthy yet whose seeds contain small amounts of arsenic. So the seeds contain a poison, but it’s not going to stop you from being healthy, strong and beautiful….”

The fact that she was still thinking about me 2 days later and came up with this special analogy means the world to me! I honestly cry every time I read it. I cannot see myself like this – yet.

I feel so broken. No one else really sees anything different, I look completely normal on the outside. Physically I’m not having issues with the cancer or treatments (other than the monthly GIANT needle). Mentally this roller coaster ride gets -5 stars, do not recommend.

Lots of thoughts circle through my head on a minute to minute basis. I thought my brain was chaotic before my surgery and cancer diagnosis. I would like to go back to that quieter time but I don’t see that happening soon.

The part I struggle with the most is what’s in store for me. The type of cancer I have is rare and I’m so new to the diagnosis. I’m being followed closely to see how the medication is affecting the existing tumors. It’s a slow growing cancer and my oncologist said I could have a few more decades with successful medication results. I try to remember this but…

It’s a really scary place to know I carry around something that will probably be what gets me in the end. How bad will it get and when? That’s a dark statement but it swirls in my head daily. It usually creeps in when discussions about future events are happening. Do I get to _______?

When my husband and I were discussing a home renovation project, my first thought was, “do I get to be around to enjoy it when it’s done?” Recently I was having dinner with 2 friends I worked with in my past zookeeper life. One had just retired and the discussion was about retirement plans. My head just kept asking “do I get to retire?” Planning a family vacation for next summer (2022) – “do I get to go & if so, in what condition will I be?”

I often hear ‘no one knows when’ and I know it’s from a kind heart. But it’s not the same for me anymore!