My oncologist has an unfortunate facial feature, or perhaps it is only unfortunate for his patients. When he talks, the corners of his mouth turn up and his teeth show through slightly, giving the impression that he is enjoying the information he is offering you, unable to stifle a smile. I’ve noticed this accidental smile when during previous meetings I have found myself almost smiling back, despite the information he gives me being nothing to smile at. Often, quite the opposite.
Today was no exception.
I walked in for my 11th of 12 scheduled infusions, though if I’m to be totally candid, I assumed that my infusions were not going to stop at 12. That didn’t keep me from getting lost in my daydreams for the week leading up to this post-CT scan meeting. I not only thought about a meeting that ended in legitimate smiles, but even let myself get carried away in the emotional wave of it all. I envisioned my oncologist bringing in other doctors to help deliver the news, exclamations of an astonishing and dumbfounding reduction in my cancer, plans for a final surgery, and continued expressions of my singular and unique recovery from the edge of the cancer cliff. I let myself get so carried away that I almost started to believe it was a possibility, a probably reality, though I’ve always seemed to recognize that if I’ve even imagined something so grand it’s more than likely not going to happen, as if I’ve jinxed myself simply by considering the extravagance of it all.
When my doctor began the meeting with the same formalities as before, I knew my daydreams were just that, dreams. I could only hope a more dire revealing wasn’t to come.
We talked briefly about my recent travels and general activities, this time confiding that I haven’t been able to run much at all due to heightened side effects from treatment. He distractedly responded as he typed away at the computer screen positioned to his side. I told him about how useless my hands can get. I told him about the sensitivity to the cold. I told him about the dead spots in my feet and how they feel as if they’ve completely fallen asleep now. I didn’t try to brush aside the complications in an effort to continue working through them. I was tired of it and I wanted to let him know.
All this was enough to trigger a change in treatment without hesitation as he quickly explained we would immediately take away the Oxaliplatin to reduce side effect accumulation. For this treatment and the next we would give my body a break from the onslaught, eliminating the cold sensitivity, part of the hand and foot syndrome, the nausea, and other effects I might have forgotten about beneath all the other discomfort. Oxaliplatin is the drug that attacks not only the cancer cells, but all the cells in the body, bad or good, leading to so much deterioration where problems didn’t previously exist. The consideration, of course, is if taking away this drug is going to allow the cancer to take hold elsewhere or give it free reign to grow. I am still administered Avastin, which is a drug that targets the cancer cells only (we hope) and so doesn’t wreak so much havoc in the rest of the body.
Further, we are also adjusting my Xeloda (chemo pills) schedule, so that I am only taking them one week on then one week off, and repeating until a change is needed. This will give me another form of respite from the deteriorating effects of these drugs.
I was relieved to hear I have a break from the discomfort, a period of healing that will hopefully allow my skin to grow back on my hands and feet, the pain to fade away and maybe a strength to take its place that will allow me to run more consistently again. Admittedly, I don’t know how this is going to play out, but I can tell you that I feel as if I skipped my infusion all together today with only the Avastin deliver in a quick 30 minute session. Minimized is the cold sensitivity, gone is the overwhelming feeling of grossness and nausea, the horrible taste in my mouth, the cold sweats, the fatigue. Now I just wait for the other effects to dissipate in the coming days and weeks. I hope. I’m not sure how this is going to play out.
We then talked about the scan itself, and just as I suspected, nothing was different. His inadvertent smile may have been more genuine when he explained that no cancer was found anywhere else in the body and although no reduction was found, neither was any growth. We are still completely “stable”. The cancer is a strong foe, but I suppose my body’s defenses in conjunction with the chemotherapy treatments are equally as strong. SOMETHING is working. It’s a little disconcerting, despite his smiling words, but he again let on that most people with stomach cancer don’t respond to the treatments, implying that the cancer usually grows, so it follows that we have something to smile about considering that mine is just in a holding pattern. My excitement at this news has become tempered, worn thin.
Without dwelling on this repeated diagnosis I asked the question pressing more heavily on my patience, “So we scheduled 12 of these treatments…since the cancer has stayed the same…what happens after the 12th? Do we keep doing this or is there a possibility for surgery? Or is this just indefinite?”
This is where I could have gone without the accidental smiling.
“Well, we know Dr. Arregui (my surgical oncologist) had problems removing the cancer at this point, and most people just don’t respond to the treatments, so right now we are in a “management phase”. We will follow up with Dr. Arregui in a couple months, but while we keep the cancer at bay, this is what we will continue to do. If the cancer starts to grow, we will add another medicine, but as long as it stays how it is, we will continue this management indefinitely.”
Indefinitely. That word was like a kick to my stomach.
I felt an initial sense of relief that I had an answer from him, a projected plan of sorts that gave me a sense of what to expect for the time being, but quickly it turned into an unavoidable dread that this is now WHAT I DO. I’m a chemo patient. There is no part of my daydream to draw from. There is no triumphant return to running. There is no sense of relief that I can just let go and feel my old life again. There is no seemingly miraculous turnaround. This is just what I do. I get chemotherapy until something happens either way. This is what. I. Do.
Forgive me for my lack of clarity in this realization or an absence of reconciliation….right now I’m still struggling to internalize that for the time being, into a future I can’t see, this is just what I do. I am, again, left with a number of NEW questions to consider as I wait through this process again. What are the chances my cancer will grow? What will my quality of life be like with reduced side effects, how much of my old life can I get back? How often will we reintroduce the more debilitating chemo drugs? How do I conduct my life from this point? What is worth pursuing and what do I need to leave behind? This is, for the time being, what I do….but what does that mean for who I am?
I didn’t want this. In a more desperate state I wanted to be told that I would either live indefinitely, or die definitely…that way I could at least make a solid decision about my life and start from there, but again, I’m left in a sort of limbo, as if I have more questions unanswered than answered. The only definitive I have at this point is that chemotherapy is what I do.
There are positives in this scenario, I know. My foundational circumstance is still that I am here to even have these considerations, and I will surely address them soon, but for now, I need the time to really sift through what my life has become and how I take this realization and get the most out of it. Honestly, Im’ not sure what that is right now, and I have no choice but to leave it at that until I figure it all out.
In the meantime…I guess this is what I’ll keep doing. Time to drop my head and push forward.