Ugh! So the other day, when I said I wish I had cancer, I was joking, universe. I did NOT mean for you to take me seriously. I was making a metaphorical comparison to cancer and the rare condition known as CTEPH. It wasn’t a request I was sending out to the universe that I have both.

But given the symptoms I’ve been having, and considering that we’re still trying to figure out why I had the blood clots that caused the PEs that caused the CTEPH…. well, basically, when I was hospitalized three years ago with the acute massive pulmonary embolisms in both lungs, everything else was put on hold while we treated and stabilized the acute condition.

But in the meantime, I had all these other symptoms that we haven’t been able to figure out what causes them. Things like, all over pain that comes and goes, irritable bowel issues, nausea and a feeling of malaise, exhaustion, blood clotting disorders, itching, facial flushing, shortness of breath, and anemia, among other things. We started searching for the symptoms, trying to put it all together–then I ended up with multiple endocrine problems–hypothyroid, adrenal insufficiency, aldosterone issues… can I REALLY have all these problems, each of these individual conditions, some of them quite rare?

That just makes no sense… but… a tumor? A tiny little tumor, somewhere it shouldn’t be, pushing on things it shouldn’t be pushing on, causing hormones to be released and systems to break down, and those hormones do weird things, like depression and itching and flushing and IBS symptoms, and and and…

What if it IS cancer?

Carcinoid syndrome or paraneoplastic syndrome–both conditions caused by a slow-growing, non-aggressive cancer, often a tumor, but not always (sometimes blood cancer). The one most likely? A sub-type of Hodgkin’s lymphoma. But it could be something else too. My liver, which should be about 7-9cms in size is measuring on CT scan at 19cms… that’s pretty big. We don’t know why that’s the case, because with my whole foods, mostly vegetarian diet, it’s definitely not likely it’s from fatty liver (which is becoming quite common). So where is that coming from? Could I have tumors in my liver and not know it? The liver is the most likely place carcinoid syndrome will metastasize to–and it can also be in the lungs or anywhere along the digestive tract.

And I’ve never even heard of it before. But I was tested for it last week. Got a big orange jug with BIOHAZARD printed on the side of it and I had to pee into a ‘hat’ on the toilet and pour it into the jug for 24 hours. Sent it in to the lab to get a test known as the 5-hydroxyindoleacetic acid (5-HIAA) urine test (click this link if you want to learn more about the test–this website is amazing for learning about lab testing. The list the tests and what to expect and explain what the results mean too. I love this website!) We returned it to the lab on Friday.

I’m waiting on the results. In the meantime, my doctor wants to check me for paraneoplastic syndrome too, so I will get that test in blood work taken on Wednesday when I visit my rheumatologist. I love that my doctor works so closely with other doctors! She’s even giving me a referral to go to the new specialist I’ve been trying to get in to see! She sent her a letter and everything. It’s so nice to have such an amazing doctor finally!

In the meantime, I’m sitting here waiting, hoping I don’t have cancer, and kicking myself for forgetting that sometimes the universe has a really wicked sense of humor.

As soon as I have the test results, I’ll let you all know too.

Here’s hoping that the tests do nothing but alleviate my anxiety, and we can keep looking for answers and solutions in other, less stressful and scary things.

Love and stuff,

Michy