{"id":520,"date":"2015-02-10T04:18:51","date_gmt":"2015-02-10T04:18:51","guid":{"rendered":"http:\/\/michelledevon.com\/?p=520"},"modified":"2021-01-02T04:22:42","modified_gmt":"2021-01-02T04:22:42","slug":"it-was-a-joke-really-it-was","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2015\/02\/10\/it-was-a-joke-really-it-was\/","title":{"rendered":"It Was a Joke; Really, It Was!"},"content":{"rendered":"

Ugh! So the other day, when I said I\u00a0wish I had cancer,<\/a>\u00a0I 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\u2019t a request I was sending out to the universe that I have both.<\/p>\n

But given the symptoms I\u2019ve been having, and considering that we\u2019re still trying to figure out why I had the blood clots that caused the PEs that caused the CTEPH\u2026. 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.<\/span><\/p>\n

But in the meantime, I had all these other symptoms that we haven\u2019t 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\u2013then I ended up with multiple endocrine problems\u2013hypothyroid, adrenal insufficiency, aldosterone issues\u2026 can I REALLY have all these problems, each of these individual conditions, some of them quite rare?<\/p>\n

That just makes no sense\u2026 but\u2026 a tumor? A tiny little tumor, somewhere it shouldn\u2019t be, pushing on things it shouldn\u2019t 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\u2026<\/p>\n

What if it IS cancer?<\/p>\n

Carcinoid syndrome or paraneoplastic syndrome\u2013both 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\u2019s 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\u2026 that\u2019s pretty big. We don\u2019t know why that\u2019s the case, because with my whole foods, mostly vegetarian diet, it\u2019s definitely not likely it\u2019s 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\u2013and it can also be in the lungs or anywhere along the digestive tract.<\/p>\n

And I\u2019ve 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 \u2018hat\u2019 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\u00a05-hydroxyindoleacetic acid (5-HIAA) urine test<\/a>\u00a0(click this link if you want to learn more about the test\u2013this 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.<\/p>\n

I\u2019m 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\u2019s even giving me a referral to go to the new specialist I\u2019ve been trying to get in to see! She sent her a letter and everything. It\u2019s so nice to have such an amazing doctor finally!<\/p>\n

In the meantime, I\u2019m sitting here waiting, hoping I don\u2019t have cancer, and kicking myself for forgetting that sometimes the universe has a really wicked sense of humor.<\/p>\n

As soon as I have the test results, I\u2019ll let you all know too.<\/p>\n

Here\u2019s 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.<\/p>\n

Love and stuff,<\/p>\n

Michy<\/p>\n","protected":false},"excerpt":{"rendered":"

Ugh! So the other day, when I said I\u00a0wish I had cancer,\u00a0I 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\u2019t a request I was sending out to the universe that I have both. 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