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.