Oh Where Oh Where Is The Cancer From — Oh Where Oh Where Can It Be?

So, its week two since my news and no one yet knows where the cancer came from that is in my lymph nodes and my liver.  We do not know the primary source.  Dr. Death called it “occult primary,” meaning that it was mysterious and of unknown origin.   Not acceptable.

At Karmanos, I start with their GI doctor and then get traded by him to the lung doctor because of the history of a cough I had for a couple of months. So it is still “occult.”   Its a bit disquieting to know I have metastasized cancer but so far no one has any idea where it came from.  And I have no symptoms, making it even more mysterious.   In fact, as I write this 5 weeks into the diagnosis, I feel great, am eating great, am doing ashtanga yoga 4 times a week and am strong.  Just makes this even more surreal.

But there are tests, tests and more tests to try to unlock this mystery: an MRI of my brain, head and neck, a pet scan of my body, and a core biopsy of my bad lymph nodes.   Never been poked or prodded this much in my life.  Never expected to be.

And I will not begin to discuss the original pathology report based on a few cells taken with a small needle. That pathologist (not at Karmanos) definitively stated it was squamous cell carcinoma, the worst you can have, and one that rarely even sees a partial remission, let alone a complete one.  This explains why almost every hour on the hour my friends Judy and Deb (Judy’s husband is a pulmonary doctor at the same hospital, who reviewed the report) are texting me to check on me, asking if I need anything are wanting to see my daily, and clearly are so distraught they cannot hide it.

So, I do the tests. The first good news – I do not have anything in my brain, neck and head.  This news makes me so happy I have my first good night’s uninterrupted sleep in two weeks.  Funny, how everything has to be put in context.   The second good news – no other spots are seen in my body except a spot at the top of my stomach which may be the source.  The third and most important good news, Karmanos says that the first slides with the few cells were not enough to know the type of cancer cells, only that they were cancerous. The core biopsy showed I had adnocarcinoma, a much more treatable form.  Again, euphoria and again, I marvel at how my perspective has changed.  Two weeks earlier knowing I had any type of cancer would have made me crazy.  Now I am happy it’s a different type than originally told and it’s nowhere else in my body that is detectable.

Next steps, more tests – this time an endoscopy.  And…success…the GI doctor finds the original tumor, biopsies it and it is confirmed to be the primary source.  I have stage IV stomach cancer.   They give me pictures – the tumor is not pretty.  The inside of my stomach is not pretty, but it is better than the tumor.

Now I am back to the first doctor I saw at Karmanos, Dr. P.  And at least we know where it came from, and where it is.

Now to learn of my options…and to set up other opinions.  This is becoming another job in additional to my real job.  But I know better than anyone, having cared for a sick mother who has been in assisted living for the last 6 years, that I must be my own patient advocate, just as I have been for her all these years. This means asking a lot of questions, knowing all of my options, being a knowing and active participant in my treatment decisions, being persistent in getting other consultations, and learning as much as I can. Those 6 years trained me well to become my own advocate.

And this is what I have to say to the cancer – I am strong, I am powerful, I am a warrior, and I have declared war on you.  You will not win – you may give me some twists and turns along the way, the path may not be smooth, but I intend to use my advocacy and strength to survive and be done with you in the end.  On to the battle.

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