We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.
And that is where I sit today…
My meds arrive tomorrow. Everolimus and exemestane, generic for Afinitor and Aromasin. Call it what you will, I’m not ready. I want to WANT to dive into the treatment with the enthusiasm for what is possible. But this treatment teeters on the edge of “real” chemo in my mind – with all that means in terms of a compromised quality of life. I’ve wondered, out loud to some, if I’m being melodramatic. Then again, it is what it is. I have to get my ducks in a row. Since lung/breathing problems are a real risk I need to get a pneumonia vaccine (and those HURT!). Increased risk of infection is also a real concern, and Zach is certainly coming down with something. And there’s one more bottle of wine to enjoy before I run the risk of mouth sores, which will only be made worse by alcohol.
Like any educated patient, I’ve read the drug-related information online. Some of the other common side effects include headaches, nausea, nosebleeds, diarrhea, dry skin, possible hair loss, tiredness, coughing, low red counts, high cholesterol, and weight loss (helavai as we say in Hebrew - it should only be so!).
Obviously, the benefits of the drug are designed outweigh whatever the side effects, and generally they do. But in more than 12 years as a cancer patient I have learned that when the doctors tell you they don’t know how you are going to respond, they really don’t know how you going to respond. Each patient is in fact unique and each drug reaction equally so. So, when all is said and done, it’s a crap shoot.
For better or worse, I’ve also checked in with the patient communities online. My friend Jody was quick to remind me that hardly any of us sign on to share how great we’re feeling on a given protocol – and she’s right; it’s those of us who are having a hard time who post to message boards. But I read anyway, and on this seen everything from “I haven’t felt this good in years” to “neuropathy has left me confined to a wheelchair” as I read about this treatment. Alas…
The good news is, I tend to land in the well-tolerated end of the side effects of whatever drugs I’ve taken so I remain optimistic. Eternally optimistic. But I feel the angst. And I suspect this is part and parcel with living with mets, where new treatments are the best we can hope for, and tolerating them well is gravy.
So while I am eager to start, to push the cancer back once again, I also live on the edge of tears these days. TRANGST – the edge of the unknown. This could be the treatment that gives me a CCR – complete clinical response; someone has to fall into the “best of the best” end of the statistics! And yet I can’t help but wonder where the line is, when I no longer feel well enough to do this or that, when the treatment that has me too tired, or when there is too much pain. Is this the treatment that will give me years, even decades? It’s a crap shoot….