Why I’m Writing My Pheochromocytoma Survival Story

This has been a quiet summer for me. I haven't written too much aside from Facebook updates for family and friends accompanied by many prayer requests.
 

You see, this spring, we were hit with yet another storm- just as we felt we were recovered from the big storm of 2013. Only this one ended up being a matter of life or death for me.

 

Why I'm Writing My Pheochromocytoma Survival Story

 

But God has been very gracious to me! I'm still alive, and I have all my abilities in tact. I can't say as much for all my body parts, though. {grin}
 

The Hand of God has been so evident in my life these last 6 months that I feel the need to share the story. You see, it's really His story. It's a display of His Glory and His Goodness. And it's one that so many others share. And it's one that we can all learn from.

 

The brief version of the facts are this:
 

In March I went to the ER with pain around my waistline on the right side (both front and back), shortness of breath, and had been throwing up. It turns out that I had a tumor on my adrenal gland (sits on top of your kidney in your lower back). It's a very rare type of tumor, called a pheochromocytoma. (Pheo, for short.)  My blood pressure started to go extremely high. They got me stabilized, figured out my tumor was bleeding, did a procedure to stop the bleeding, and sent me to Indianapolis (the large city close to us) for surgery with an experienced surgeon.
 

My tumor was 7cm across (as big as my fist) and was the biggest my surgeon had ever seen. It was also bleeding into a pouch that was almost as big as the tumor. My surgeon had also never seen a pheo bleed. After I scared my surgeon, my mother, and my husband out of their heads, God brought me out of surgery alive. My team of docs weren't really sure that would happen. God surprised them all.
 

We learned that pheos are rare, but there are also different causes for this type of tumor. They are normally not cancerous. Sometimes they happen randomly, but sometimes they happen because of a few different genetic disorders. Typically, when someone comes in with a pheo, they pick one of these four disorders and test to see if you have it. If you don't, they test for the next one… until they get through all 4 disorders or they find you are positive for one of them.
 

They do not typically screen for Multiple Endocrine Neoplasia (MEN- pronounced just saying the letters) first. When they heard that 2 of our 5 children had Hirschsprung's Disease (no nerve cells in the colon right at the bottom- so they couldn't poop well/ didn't poop in first 24 hours of birth), they immediately became suspicious that I may have MEN. Hirschsprung's is not really part of MEN, but it can be related. I don't know of anyone else in our family who has ever had Hirschsprung's, but it was enough to make the endocrinology team suspicious that MEN may have been the cause of my pheo.
 

Five weeks later the test results came back positive- I have Multiple Endocrine Neoplasia Type 2A.
 

Just a few weeks later, as we were preparing to remove my thyroid gland to prevent medullary thyroid cancer, we discovered that I already had it. With this discovery, the plan changed. They removed not only my thyroid but also 70 lymph nodes from both sides of my neck. Fortunately, the cancer was at Stage 1 and only 5 lymph nodes were infected with the medullary thyroid cancer. At this point, it looks they got everything.
 

Then my children started testing to see if any of them also has this genetic disorder.

 

 

As I've been walking this road, I've learned a lot. Among the things that I have learned is that pheochromocytomas are rare, but they happen. Often they happen when the person has no idea that he has any predisposition to pheos. I've learned that Multiple Endocrine Neoplasia is also a rare disease. In fact, there is a list of diseases that are classified as "rare." I had never heard of this disease before we discovered it had been ravaging my body. We have yet to see how many of my family members have MEN 2A without realizing it.
 

One thing I have realized is that "rare" still happens. It still means there are hundreds or thousands of people across the planet who are struggling with that one rare disease.
 

And they need stories of hope… just like everyone else.
 

God has given me a story of hope. One that shows He has His eye on the few… on the rare.
 

It's a story that I need to share.
 

So I'll be sharing the rest of my Pheochromocytoma Survival Story here on the blog.
 

The rest of my story– Multiple Endocrine Neoplasia, pheochromocytoma, medullary thyroid cancer, familial genetic disorders, and all— will be wrapped up in a book that God is writing day by day and using me to write it all and share it with the world.
 

And then I'll share it with you…
 

Please pray for me as I write it… and continue to walk it?

 

 

3 thoughts on “Why I’m Writing My Pheochromocytoma Survival Story

  1. THANK YOU, THANK YOU, THANK YOU!!! Thank you for your wonderful story of hope. My husband has been dealing with high blood pressure that caused an aortic dissection and several aortic aneurysms since 2011. They just discovered a small Pheochromocytoma yesterday. I work in the medical field and this was a term I was not familiar with. I have researched and am terrified of this surgery. We meet with the surgeon tomorrow to put a plan in motion, needless to say I have been praying almost non-stop. Thank you again, I now have a little peace and can start processing this diagnosis.

  2. Hello!
    I was rushed to the hospital one evening recently when I thought I was having a heart attack, surprising at 43 years old with no issues of the heart! It ended up being Tachycardia with no other explanation. No stroke, no heart issues. I’ve been having terrible headaches, shortness of breath & higher than normal blood pressure for me. My doctor ordered a CT scan & they found a “suspicious” adrenal mass. It’s really small….but upon research Pheo fits….13 years ago I had a Carcinoid tumor (2 actually with spread to lymph nodes). Carcinoid & Pheos are NEUROENDOCRINE tumors and I have been tested for MEN 1 & MEN 2 and both came back as negative….so this is an interesting situation I’m in. The CT scan is calling it a benign adenoma.
    Seeing my doctor tomorrow to get more answers.
    Thank you so very much for sharing your story for others to read!

  3. Ty so much for sharing. Is your completed book available online or in stores, and what is the title of it? I’m in diagnosing stage and it’s rather scary trying to avoid the symptoms of heart attack or stroke from the severe pressures and heart rate and then the plummeting that accompanies it as well!!
    I sent a PM to you from FB and Instagram

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