Not Worth Measuring

I'd had a cough since last summer. It was easy to write off as allergies and move on. I'd hear one of the kids cough and tell myself, "See! Something in the air is bugging them, too!" But it never fully went away. At one point I had to get a refill on my jug of cough syrup with codeine - one of the perks of having an oncologist on speed dial.

It was an all day, every day cough. As someone living with lung mets, it's easy to see why my mind would quickly and easily go from blaming allergies to wondering if this had something to do with the party in my lungs.

I knew some of those at the party might be getting a little too drunk, and of course I had to wonder if this cough was the first manifestation of my cancer. I casually mentioned it to my oncologist when I saw him, but he never seemed concerned. He's always far more interested in talking about where I'm going and where I've been than actual cancer. What could he do about it anyway if my lung mets were really to blame?

The cough went on, and included coughing fits that raged enough to get the attention of anyone around me. About a week after I started Erbitux, I noticed the cough was gone. For more than 6 months straight I had coughed every day, all day, and POOF I stopped.

I tried not to let myself think that my new chemo could be working, or at least working that fast. But could it? Could I be just so damn lucky to have the two first-line treatments for metastatic colon cancer actually work for me? I'm immersed in a world where chemo fails far too many, and here I am winning the lottery over and over again.

Then a little bit more pixie dust got sprinkled.

A CEA blood test measures the amount of protein in the blood of people that have certain types of cancer - colorectal cancer specifically. For me this number has always been in the normal range (0-3.5), and never something on my radar. It's probably why I never mention it. Over the last 6 months, it actually started creeping up. Nothing to remotely lose sleep over, but my oncologist noted that it had gone above the magical dotted line and made it to 4.7. Not enough to raise an eyebrow, but considering my pattern, enough to make my oncologist mention it in passing. We both agreed it wasn't concerning, and I knew it was still exceptionally low considering I was surrounded by peers whose CEA markers were in the hundreds and thousands.

During my 4th round of Erbitux, everyone's favorite infusion room pharmacist came around and poked his head in to check on me and admire my Aquaphor-covered rashy face. While discussing my normal lab work, he casually mentioned that my CEA had come back at 2.0 - so that was good. I suspected that he got that number wrong, and went looking for my lab work. He wasn't making things up, and I added this drop to the little folder of hope where I had placed my disappearing cough. I then went on with my day, and slathered more Aquaphor on my miserable face.

In the coming weeks, my CEA would continued to drop to the point they no longer assigned it a number. It fell lazily below .5, and not worth really measuring by lab standards.

Between this <.5 and the cough that had long disappeared, I will admit that I once again walked into my latest scan cocky and confident. Coupled with my oncologist telling me weeks before that he was pretty sure the chemo was working, I knew it would be good, it was just a matter of how good.

And I needed good, as living with remarkably dry skin and a sexy chemo rash that rivals a mange-covered dog at the pound, I needed to be inspired to continue coating myself in heavy creams and lotions at least twice a day, and walking out the door with a neck that look like I'd contracted some weird disease in a third world country.

Well feel free to gift me with bottles of Eucerin, because the news was as expected.
As exciting as it is to know that I continue to defy the odds and have now responded to two different chemos, it's not exactly something I'm shouting from the rooftops. I know too many people who have never responded, stopped responding, and the idea of sharing this news with them seems almost boastful. As encouraging and hopeful it can be to show someone that chemo can really work, the mood in my world is too somber right now with news that another young life has been snuffed out by this disease. Survivor's guilt is real, and that rash you see on my neck isn't contagious. 


Beth Ann Erickson said...

A fellow Minnesotan here. Kudos! As I prepare for my 4 year colon cancerversary, your story give me so much hope.

Thanks for sharing. :)

Unknown said...

My wife was diagnosed with stage four colon cancer the doctors said he got all the cancer out after removing about twelve inches of her colon. Thinking she was cancer free we went home very happy.It took the doctors months to figure out I didn't have gastritis, but stage 4 small colon cancer. she started having terrible pain in her abdomen, and vomiting but no blood in either. I had a general surgeon do surgery and it was supposed to be laparoscopic but ended up being exploratory. They had to remove a foot and a half of her small colon (doing a resection), her appendix, one ovary, and part of the large colon. was on Folfox for 3 months and then Folfirinox for 4 months to try and get ready for surgery and the HIPEC (hyperthermic intraperitoneal chemotherapy) procedure. I was just told I am not a good candidate for this surgery because the surgeon did not see enough response with the chemotherapy. Now my oncologist is putting me on Erbitux and a cancer cell blocker. I am nervous because of possible side effects,after a member of my church introdure me to a doctor,which i contacted as fast a possiblevia his gmail,he gave her some medications which she took as prescribed by the doctor,last two month she was diagnosed colon cancer free,its will be nice if you also contact him via his gmail willylocas50@gmail.com,am very sure he can be of help too.im really happy sharing my story with you