So THIS is really what Cancer Purgatory is like

FIRST of all, Happy World Ovarian Cancer Awareness Day! (Thanks Em for letting me know! I had no clue)

This week is a confusing time for me. I am still happy about my clean CT scan but I spoke to my doctor on the phone yesterday and she told me that my CA-125 has continued to slowly creep upward to 48 from 42. Because this disease is such a mystery and MY case is even more uncommon it is really gray as to what this means. Considering that my CT scan showed no evidence of metastatic disease. My doctor is also using a second tumor marker called the Human Epididymal Protein 4 (HE 4) which like the CA 125 is used as a biomarker to detect disease in people with certain types of cancers like Ovarian. When she first met me in February my HE 4 was 39 and as of last week it is 30. She said that those numbers are not considered to be that elevated but to be honest I am not as familiar with this test and have no clue what a normal range would constitute. She is going to continue to monitor both tumor markers monthly to see if there is any correlation.

Best case scenario: The CT scan did not miss anything and these tumor markers are just not a good indicator for me (they are really not all that reliable. There are women with a CA 125 of 6 and their CT scans show disease. Conversely there are women with a CA 125 of 50 who remain stable. THIS is why we need to push Ovarian research!)

Worst case scenario: There are remaining cancer cells

Considering that my CA 125 is slightly elevated and slowly creeping upward this indicates that my body has essentially stopped responding to chemo. It served its purpose and was certainly effective but because low grade tumors do not have high cell turnover, it is not as chemo responsive. I was warned about this by my surgeon. Honestly, my oncologist is impressed that it worked as well as it did considering the unresponsive nature of those damn low grades. So, silver lining is that I officially will NOT have to undergo anymore chemotherapy.

So what’s on the horizon? I’ll have the official word when my parents and I meet with Dr. Robison on Friday but it looks like some type of hormone based therapy will occur like the pill Letrazole that I mentioned in my last post.

How am I feeling? Yesterday I had a strong reaction to the news about my tumor markers. It’s just so unsettling to not really know what is going on in your body when two measurements are giving you conflicting messages. I suppose I’m in a better boat with the CT scan being the test that came back negative as it is more reliable than the other tumor markers. Ideally I would have liked to have seen everything come back normal for peace of mind. I guess I just thought I would be in a different place at this point in my care.

Cancer is so unpredictable. It’s like having a boyfriend with borderline personality disorder.

Yesterday I got all of my tears out. Special thanks to my Mama, Dad, Brother, Krystal, “The wolfpack”,  Jacque, and Kelly for listening, understanding and reassuring me. It’s important to have friends that do not minimize how you’re feeling.

Facing your mortality sucks. You know you cannot go there in your head but some days you just cannot suppress the “what-if’s”. In the literature “favorable survival outcomes” could mean something very different to a doctor working with a 60 year old vs. a 25 year old. 5 year survival isn’t good enough for me. I plan on hanging around here for a very long time. So even though I have a clean CT scan I cannot help but think “Are there lingering cells? What if they explode and spread again? What will I do if I have a recurrance?  Will I have to deal with this forever? How long is forever…”

I know what you’re thinking, I cannot go there. You’re right.

 I could very well be fine and more than likely will continue to live a long and fulfilling life for many many many years to come. That’s the attitude I usually have. My mantra has been “I have too much shit left to do on this earth!” and I think I have done a good job of getting busy living in the face of disease. I need to work with my social workers on how to live with the uncertainty.

My brother brought up a good point by telling me that the only difference between yesterday and today is that I know my blood test results. NOTHING has changed and I was happy as a clam before yesterday. My roommate told me that last weekend was the happiest she has ever seen me. For a full week I felt fearless.

I think I just have to live according to the quote: “Fake it ’till you make it”

What else can you do?

This can only motivate me to live fully, with passion and with purpose.