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!

Just a recap of how it started: I’m listing all the fun activities leading up to the spring break photo (above). It was many trips to the ChristianaCare campus working around my class schedule. I didn’t realize the craziness of it all until I made a list of all my appointments up to surgery on 4/8/21.

1. My new year started with my annual MRI to continue monitoring me for breast cancer recurrence.
2. I had my semi-annual visit with the NP to discuss the MRI results (all good). I mentioned the ongoing issue of spotting, which can be a side effect of the medication I was on to reduce my risk for more breast cancer. She insisted I see a GYN and set up an appointment for me.
3. GYN – attempted to do a uterine biopsy in the office but my body wasn’t having it.
4. GYN – sent me for an ultrasound.
5. GYN – D&C under anesthesia (outpatient) but required more paperwork, bloodwork & a covid test – I’m vaccinated already! – results found fibroids, benign, but the ultrasound showed my ovaries were funky.
6. …In the middle of all this was my yearly PCP visit and more routine bloodwork…
7. GYN – ordered an MRI and sent me to see a GYN Oncologist. I think I have seen 90% of the providers in the Helen Graham Cancer Center (HGCC) now.
8. GYN/ONC suggested/insisted – I agreed – to a full hysterectomy as precaution because of my past history with breast cancer (this will be a completely separate post later).
9. Needed an EKG, another covid test and more bloodwork before surgery – not all at the same time, more visits to the CC campus.
10. The photo above was during my 4-night stay in the hospital. It was supposed to be laparoscopic same-day surgery. I was going to ask for BOGO liposuction but got a small bowel resection instead! My GYN/ONC noticed a tumor on my small intestine while using the camera. Another surgeon was called in to remove a section of my intestine, then my GYN/ONC completed her part of the program. All of this was done by fully opening my lower abdomen.
11. SO… turns out I had/still have a well-differentiated neuroendocrine carcinoma, stage IV. The original tumor on the intestine was removed, clean margins. But it has spread to a couple other locations.

What’s next: My cancer does not respond to chemo, meaning this is not my treatment path, but also it will never be gone from my body. It is a slow growing type of cancer. My treatment consists of monthly shots in my butt OOWWW with a medication that will hopefully interfere with the cancer and keep what is there from progressing. There is also monthly bloodwork to check tumor marker and serotonin levels, both are sort of indicators of the cancer activity. I had a PET scan to identify the locations of what is still there and will have regular CT scans to monitor the locations. This is where the rollercoaster ride begins…

I’m writing this blog as another form of therapy to wrap my head around my reality. I didn’t know where to begin the story and the posts are all over the place. It mimics the chaos in my head.

These are my own thoughts and experiences mostly related to my health. Other ideas I have creep in at times. New stuff appears as I process all this crap.

I often tell my students ‘if you can explain it you understand it’. Usually this is my attempt to help them with study habits. But I’m realizing it also pertains to this blog – I am trying to explain me to me to help me understand what the ****** is going on now.

Just FYI – I have no way to know who reads any of this, viewers are not identified. Comments and comment authors are public once I approve them.