One year after surgery: a retrospective

I’m still coming to terms with my new identity as a life-long cancer patient, as well as the transition from Librarian to not-Librarian. Most importantly, however, I have absolutely been loving being home after school with my daughter and eating dinner together. With my previous schedule, on an early day I’d get home at 6:45pm, and on a late day (which was once or twice a week), I’d get home at 8:45pm or later. As she rushes through the tween years, this time together is priceless. During the day I’ve been volunteering a little at her school, helping my husband navigate the byzantine health care system for his own issues, leaning into the housework, working on house projects, spending more time with the pets, and finally FINALLY catching up on my reading!

I’ve also finally had the time to do a deep dive into the current research about neuroendocrine tumors (or NETs for short). I’ve been listening to a lot of podcasts, reading papers in medical journals, and learning all I can about clinical trials and possible new treatments. Podcasts in particular have been great, as I can hear current interviews with top doctors from all across the globe. My favorite podcasts about NETs are: The LACNETS Podcast, NETS Get Real, NETCast, and NETWise.

I’ve been able to attend more cancer support groups, and do meet-ups with friends who have similar journeys. This week I was fortunate enough to be able to attend a free retreat at Harmony Hill for metastatic cancer patients. It’s located on the Puget Sound southwest of Seattle, on a big property surrounded by woods. It was a wonderful experience, focusing on group healing, wholesome food, meditation, and connection with others. I made some real friends, and we plan on keeping in touch. There are other free cancer retreats in other parts of the country that I’m going to explore in the future as well.

I found a great fillable PDF that helps patients track all their NET-specific cancer markers, tests, surgeries, etc. I realized that I have never posted on this blog some of those numbers, so here is the full breakdown:

• Age at first diagnosis: 37
• Primary tumor location: small intestine
• Surgery: 2015 = 4 tumors / 2022 = 18 tumors
• Ki-67 index: 2015 = 2% / 2022 = 2% and 3.5%
• Largest tumor: 2015 = 1.8 cm / 2022 = 2.7 cm
• Grade: 2015 = 1 / 2022 = 2
• My NETs are “functional“.
• Stage Four since 2015 (once a person is in Stage Four, always in Stage Four, no matter your treatments)

Current status of my health

I still get flushings once a day or so, but they are manageable and not nearly as bad as before the surgery. My GI/IBS issues continue to plague me, but I have an appointment with a new doctor in December, and hopefully they can help me onto a new path. I’ve been getting new dizzy spells where my blood pressure seems to be either high or erratic, but no one has a clear answer on that right now, so we’re just keeping an eye on it. Fatigue: yes of course. I’ve been sleeping better, though!

This month I had a CT scan and met with all of my oncologists (Dr. Pommier as my NET expert a.k.a. the one who did my Big Surgery, Dr. Kohn as my local oncologist whom I currently meet with every three months, and Dr. Madison who did my thyroid surgery). Takeaways are…

• Some very, very minor tumor growth in my liver.
• The lymph node they are keeping an eye on has had no change.
• The tumors that were left on the top of my diaphragm have had very little growth.
• My abdominal scar shows some separation, but as long as I don’t have any pain or herniation it’s nothing to worry about.
• Spleen is still enlarged, but no other issues.
• My thyroid bloodwork looks great, and as long as I keep taking my daily pill, I won’t need to be concerned about it probably ever again.

So, basically no surprises. Which is great news; I’ll take it! NETs are described as “slow” and “the good looking cancer“, and that continues to track with my experience. I know I will need to have another big surgery at some point, and I will cherish each and every day before then!! More and more I’ve been discovering my joie de vivre. I am so grateful for all the beauty that is in this world.

Looking forward

Everything is perspective. In many, many ways I am extremely privileged and lucky. Halloween is right around the corner, which is SO fun, and then the other holidays are coming up, which I love too. My next CT is in six months, so I can just relax until then.

PS – On this CT Dr. Pommier discovered that the nurses have been poking me in the wrong spot for my Sandostatin shots!! They are poking me too far out toward my hips; the poke needs to be closer to my spine so the needle goes into my muscle. The CT clearly shows this, and I took a picture so I can show my nurses in the future (see below). As much as I have enormous respect and gratitude toward all the nurses that administer my shots, honestly at this point I probably know more about NETs and Sandostatin than most of them. Twice in the last year it wasn’t prepared correctly, and I was left with giant bruises. A reminder to advocate for myself!