2.24.2017

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. 

2.21.2017

Right Between the Toes

Thanks to the power of social media, I've met another "lymphie" (as we call ourselves) who lives in the Twin Cities. It's one thing to connect with so many other young women dealing with lower limb lymphedema all over the world, but it goes to the next level when one of them is sitting across from you having coffee.

This person happened to be far more proactive than I've been about my leg, and instantly set me on the path to doing what needed to be done to not only get the best care around, but start the ball rolling on the surgery to potentially get it fixed. She has not only had the surgery, but has fought the insurance battle I have ahead of me to get it paid for. This was just the friendship I needed on so many levels.

Today was one of the first steps in Fat Lefty's mission to return to normal, or as close to normal as he may ever be.

Per the doctor's orders (because there happens to be an MD in town who specializes in lymphedema), I had a lymphoscintigraphy and standing Doppler.

Dr. McHottie didn't stick around for a photo,
nor comment of the mud under my toe nails from
3 straight days of muddy trails this weekend.
In my best non-technical description, the lymphoscintigraphy involved me laying on a table, having extremely painful injections between my toes, and a series of x-rays to see how these radioactive tracers moved up both legs. When Dr. McHottie said the injections would hurt, he wasn't kidding. Rarely am I vocal during a shot, but I think I channeled Ricky Bobby and called out to the Lord Baby Jesus for each round. Let's just say that if I ever become an IV drug user, shooting up between my toes will not be an option. And should I ever decide that tattoos are for me, getting one anywhere near my toes ain't gonna happen either.

After the first series of x-rays on my legs, I walked around for 45 minutes and then had the same process repeated from head to toe.

The afternoon was far less painful, but far more entertaining. I walked over to the heart hospital for a "standing Doppler" of my legs to check on my veins. My medical tech for the procedure was Russian, so I will expect you to read her part with your best Russian accent.

Tech: "You are to remove everything from the waist down but your undergarments."
Sarah: "Um, undergarments?"
Tech: "Um, you're not wearing undergarments?"
Sarah: "Ummmmm, nope!"
Tech: "Uhhhh, no?"
Sarah: "You know, going commando."

I should have known that would have been lost in translation by the lack of amusement on her face.

Tech: "I will be moving your legs all around, up, back, to the side."
Sarah: "So like a Brazilian bikini wax?"

I should have known she would not get that joke either.

Tech: "Um."
Sarah: "I'm cool. I'll just wrap the blanket around me and go with it."
Tech: "Um."
Sarah: "Or I'll wear a diaper, or those gauze panties they give you up on the maternity floor."
Tech: "Just use the blanket."

I don't think she was very pleased with me by the time we started.

She then proceed to wedge her ultrasonic tool so far up my groin, undergarments would have clearly been in the way anyway.
Glow little lymphatic system, glow!
The white dots are the radioactive tracer  remaining in Fat Lefty, clearly not
present in my boring right leg because that fluid is long gone.