Scanxiety!

This past week I had an echocardiogram, bloodwork, an MRI, and then an appointment with my oncologist to discuss all the results. Verdict: my various tumors are growing so slowly they are considered “stable”, and although I do have new tumors, they are still quite small. In Cancer World, that is all GREAT NEWS, and I’m feeling lucky and appreciative!!

One new possible concern is my heart. “Carcinoid Heart Disease” (blood sloshing around in the right side of the heart because NETs are causing plaque-like deposits on the valve) is a real concern for patients with neuroendocrine cancer. This week I had a Pro-BNP blood test to see how stressed out my heart is, and my level is elevated compared to last year. Also, on my recent echocardiogram I show “mild” tricuspid regurgitation, which is an increase from the “trace” tricuspid regurgitation I showed a year ago. So, my oncologist is staying on the right side of caution and is looping in a cardiologist to my case.

So between all the tests and the news about my heart, this past week has been really stressful. “Scanxiety” is a term I’ve come to know well, and when I have a set of important appointments like this, my tension levels go through the roof. My go-to stress relief and distraction techniques are (and cheesy as they sound, they do work for me):

• Take a long, hot bath.
• Drink herbal tea.
• Give myself a foot massage with my acupressure mat.
• Write in my gratitude journal.
• Take some chill time/nap under my heated blanket.
• Listen to an engaging audiobook or podcast.
• Talk about all my medical issues in great detail with my sister or a friend.
• Find silver linings.

(Sidenote: I want to do more breath work and meditation, but for some reason those are harder habits for me to build. I will keep working on it! I read Atomic Habits by James Clear several years ago, and it continues to be an inspiration to me.)

Speaking of stress, I want to thank everyone who checked in on me this week. Many family and friends messaged me saying, “I know you have scans coming up, and I’m thinking of you” or “Have you received your scan results yet? I’m anxious to hear the results too!” and that means the world to me. Having cancer, especially a rare cancer, is scary and isolating and depressing; my support network is my rock. I couldn’t successfully navigate this journey without all of you!!! ❤

If you know me well, you know that I don’t like to complain. I admire stoics, both in the “ancient philosopher” and “modern” interpretation of the word. This blog has been a way for me to bridge the gap between “not complaining” and “keeping my network posted about this hard journey.” As such, I should tell you my daily pain has slowly been increasing. The whole abdomen aches all the time, and my discomfort is sometimes focused in the spleen, sometimes the liver, sometimes upper GI, sometimes down in the depths of the abdominal cavity. I’m taking Tylenol twice a day now to stay ahead of the pain, which definitely helps.

I also need to report that fatigue is something I deal with now all the time as well. I was in the best health of my life in the summer of 2022, before I had The Big Surgery. For example, I was power-walking on my treadmill at 5am most mornings! After the surgery I slowly built up my endurance again, but I seem to have hit a plateau. I get winded pretty easily nowadays, especially if I’m going uphill. Building my stamina is harder than it used to be. Is it the cancer, the monthly Lanreotide shots, the multiple surgeries, or the fact that I’m almost 47? Who knows? But it’s my reality, and all I can do is try to eat well and be as active as my health will allow. So, if I need to take a sit down or walk slower than expected, please be kind. Offering me your arm as we walk along for a “tow” will be much appreciated and never turned down!

Some good news I have to share is that recently I FINALLY was able to see a new GI doctor! As many of you know from personal experience, sometimes it takes ages to see a new provider, and I had to wait six months to see someone new about my chronic diarrhea. They prescribed me Cholestid which I ended up taking for not more than a week because it gave me “the toots” something AWFUL just like Cholestyramine did several years ago. However, something helpful did come out of the appointment. I’ve been reluctant to take too much Imodium as I have heard horror stories about people getting acclimated and it losing efficacy, but the GI doc said that was highly unusual, and encouraged me to take it twice a day as a preventive measure. He even gave me a prescription for it so I wouldn’t have to pay over-the-counter prices. And, I’m happy to report, it has been helping!! Yay!! I’ll happily take this boost to my quality of life!

Care plan for the rest of the year:

1) I have a referral to see a cardiologist and get a “MRI with elastography” for my heart.

2) My oncologist is working on finding me a hepatologist (a.k.a. liver specialist) who will take me on, so we can try to figure out why my darn spleen is still so enlarged.

Here is a quick review of my spleen timeline:

• 2020: Spleen is first noticed on a CT as “enlarged”
• 2021: 1st splenic infarct
• 2022: 2nd splenic infarct (relevant blog post)
• 2024: NETs are seen in the spleen for the first time

3) In August I’ll have another MRI and an appointment with my oncologist.

4) In November or December I’ll have another DOTATATE PET scan.

Onward and upward!