Uncharted Territory

Today marked my 13th infusion, which officially put me one treatment past the originally scheduled 12. It didn’t necessarily mean anything of significance for me as I’ve already reconciled this new indefinite treatment “plan” and so it was conducted as unceremoniously as the rest. With every extended day, however, brings new questions and considerations, some of which were brought to my medical oncologist today.

The meeting with him was expectedly robotic. I weighed myself before entering the room. Took the thermometer from the nurse and inserted it under my tounge. I could have wrapped my bicep with the blood pressure cuff and worked the machine if she let me.

“He’ll be right in to see you.” she repeated, but which is never true. We waited for 5 or 10 minutes before he finally walked in, greeting me with the kind, but rather tired, “Hello Superman, how are you doing?” and we got on with the assessment.

He asked about my activity levels, appetite and side effect symptoms. I explained that with the oxaliplatin removed, my hands are significantly better and I’m no longer experiencing the cracking, splitting and bleeding in the creases of my fingers. My feet, however, are another matter. Fortunately, the hand and foot syndrome is minimized and so the consistent pain is mostly gone, but the “pins and needles” are consistently prevalent, effectively leaving my feet “asleep” all day. Every step. This, I learned, is precarious nerve damage. I’m experiencing neuropathy in my hands and feet, so that every step is on pins and needles, and extending my arms completely sends the same sensations into my hands. Freakishly, if I drop my chin to my chest quickly it sends a shock of tingling into my feet, the action somehow activating a nerve pathway through my spine I assume. These sensations in my feet have ALMOST rendered my running non-existent.

I haven’t run or engaged in much physical activity for a month or so due to this physical situation, but the past couple days I decided to fight back a little and run on deadened feet anyways, if only for a mile the first day and two the second. I just wanted to see what it was like. Expectedly…although I did it…it sucked.

I’m basically waiting for these sensations to leave my body, along with the drug, but I hadn’t considered that these sensations could end up within me permanently. When the nurse was installing the drug bridge tubing into my port for a blood draw I confided that I really didn’t want Oxaliplatin again today, because my feet were still numb and I was dreading the continuous feeling of nausea and cold sensitivity (along with everything else that horrendous drug activates within the body as it slashes and burns it’s way to the cancer). She advised me to exaggerate the feelings to the doctor in hopes that he would keep it out, and then went on to explain that the drug can create PERMANENT nerve damage and that is what they want to avoid. I was a little taken back at that statement, not realizing my feet could be rendered like this FOR THE REST OF MY LIFE. Umm…no thanks.

Fortunately, no exaggeration to the oncologist was even necessary. He explained during our discussion that he is leaving out Oxaliplatin FOR GOOD. Well…for good as long as the CT scans don’t show any cancer growth. Right now, they don’t, and so there is no need to add the drug back in, as it is indicative that the drug might not even be doing anything. It would be irresponsible, and essentially unethical, to continue the deterioration of my body and therefore my quality of life if the drug isn’t even showing effectiveness to the cancer growth.

I’ll admit, I was pretty relieved, and almost excited that he isn’t going to give me that part of the treatment….which is a little disconcerting. First though, it’s a HUGE relief to know that my treatments are only about 30 minutes now (instead of the 4+ hours they once were). It’s even better to know that I won’t be experiencing the cold sensitivity, gross taste in my mouth, persistent nausea, flu-like sweating, hand and foot syndrome and the slew of other side effects this drug would cause in my body. It was TERRIBLE and I’m not lamenting the fact that it’s gone.

Actually, I’m quite hopeful about this change in treatment. If we haven’t don’t extensive nerve damage to my feet, I can only imagine these “pins and needles” will continue to dissipate in the coming weeks, allowing me to get back to a more consistent running regimen. Now, nothing is guaranteed in this experience and I’ve stopped assuming I know what is going to happen to my body, but taking out this drug does give me some hope for a more normalized routine to come. It’s what I’m hoping for anyways.

But what about cancer, right?

It’s funny to have been flooded with this drug for almost an entire year, assuming it was helping keep my cancer at bay, only to take it away with a sense of relief instead of absolute fear. Granted, the oncologist wouldn’t take this out if he knew it would allow the cancer to grow, and he has stated that if future scans show cancer growth, we’ll have to put it back in to see if it has an effect. With that, he also said two more statements that are worth addressing.

“Again, you are responding to this treatment, which is not normal, so keep doing what you’re doing.”

He has said this repeatedly in the past and I’ve always taken it as encouragement, whether it IS related to something I’M doing…or it’s just mere chance…the fact is that something is “working”, and that’s good. This time, though, I prodded him further about my situation..

“So, now that we’ve taken this drug out, have you seen people’s situations get worse because of that action? Or, and I know we don’t know much about my situation because it’s rare, but do you see a rapid deterioration if it does start to grow?”

He responded more in depth. (and I paraphrase)

“We have entered uncharted territory now. There isn’t a lot of data to examine in your situation. This is an aggressive cancer, but it is also slow growing.”

UNCHARTED TERRITORY he said. Basically, this cancer is rare and, from what I gathered, we don’t know what to expect from here on out. I guess, on one hand, it’s pretty great that I’ve gotten to this “uncharted territory” quite intact, quite capable, highly functioning. On the other hand….what happens in that darkened territory that lies ahead, that unlit experience, that vast expanse of ignorance? We JUST DON’T KNOW.

I wanted to know if, after this many treatments, people deteriorate rapidly and I can expect a shortened time line of being highly functional. I wanted to know if people died within months or years. I wanted to know if people just sustained at a manageable level through treatments for years on end. I wanted some idea of what to expect…but he could offer very little really. My cancer is not only rare, but my personal response to the cancer is rare, and so the ONLY thing we know is that I have made it to “uncharted territory”.

And that is as encouraging as it is frightening.

Admittedly..I don’t FEEL that frightened. I feel fine, to be honest. Relatively anyways. I don’t feel like I should alter my vision of living far into the future, of potentially outliving the cancer inside me. I feel more hopeful that I’ll be able to run on fully functioning feet again, that when the weather breaks I’ll be able to run the trails of Brown County again…maybe even attack them!

Maybe.

At this point…everything is “uncharted territory”.

And maybe it’s a little too sadistic for your tastes, but I tend to emotionally thrive in these situations, in the face of adversity. I find excitement in exploring the darkened corners, of pioneering new paths through my life. Change excites me. If I’m one of a handful of people finding their way through uncharted cancer territory, then I’ll be one of a handful of people detailing what I find out there in hopes that it can shed a little more light for others to find their way.

So at this point, I’m being sent into the dark, but I feel like I’ve got a torch to help me see what’s out there. I’m not walking blindly and stumbling through the black.

I feel like I might be able to start running through it soon, as if it’s not a darkened cavern with precarious unseen cliffs, but rather a new trail into a vast wilderness.

So yeah…let’s go see what’s out there.