Nothing catches your attention more than being told you have an incurable disease. Quick translation= “you’re dead”. All the words of encouragement, “we’ll do our best”, “you’re a fighter”, “the doctors could be wrong” are drowned out by the word “incurable”.
Doctors don’t like to answer questions like, “How long do I have, doc?”, and patients don’t like to ask such things, in my experience. But the internet and medical journals do give those answers, and rarely flinch when asked. The only real stats I can remember about my diagnosis of kidney cancer, or its more melodic renal cell carcinoma, was that about 37,000 patients were diagnosed annually the US, and about 13,000 died annually. Doing some quick math, I figured that I had three years, if I were lucky. It is now more than eight (Now TEN!) years.
Being diagnosed with terminal cancer puts you on a new journey, say the more eloquent of us. We welcome one another, remind them that this is all unknown, that it leads to a new country, the land of the sick, and certainly requires a new language. Five year survival, times to progression, overall survival, ablation, and retroperineal are the new phrases you encounter. In addition to those darn Latin words of endless syllables, that new language hijacks words we once admired, like “progression”. Progression once meant to go forward, like passing into the next grade, or getting the vote, surely good things. Not so. Progression suddenly means that the cancer is on the move again. Regression is the good word in this new language.
We can’t even pronounce half the words that are thrown around in this new world, and don’t even know that all the body parts under discussion. What is a collecting duct, have I always had a venous thrombus, and what is the difference between metastases, lesions, masses and tumors? Is positive one of those words that means the opposite of what it was?
Just as this new language swirls around you, the alien disaster grows insidiously, betraying all you trusted, someone tells you with great earnestness that you must now be your own best advocate. Isn’t the doctor supposed to be better at this than the patient? Does no one else find it ironic that the same body which produced the tumor in ignorance is now asked to defend itself, to be skilled and capable of fighting off the threat to life and to choose the weapons to do so. Am I now supposed to choose the meds and the techniques, advocate for one treatment over another? Hell, I don’t even believe that this has happened to me?
In my older world, advocates had causes and clients. They went to councils and boards, court rooms. To whom do I plead my case in this new world? And where is the court of appeals, should I need a new trial? Can I get new representation? Does my doctor even know what he is talking about? Of course, “trial” doesn’t mean what it used to, anyway. It’s more of a battle, with the weapons or medications being passed out to blinded patients by blinded physicians. Maybe half the weapons are dull or non-existent–placebos. Welcome to this new world.
There is no Stage V, of course. That is the ultimate “progression”, another form of “passing” that we talk about quietly and somberly. I wanted none of that, didn’t want Stage IV, for that matter, and yet I had been on that grim journey for many years. I had no early warning, not seen the road shift beneath my feet, nor learned the new language. I didn’t know if there were fellow travelers.
My cancer had probably started 8-10 years before my diagnosis, in some dark and poorly oxygenated part of my body, where some errant cell found a sweet spot to set up shop. Cells became a tumor, which became a mother ship, sending off colonizers, who found endless new sites in my lungs, “tiny tumors too numerous to count”. That eerie phrase from the CT report lodged in my head. No doubt, countless other tiny tumors, yet to be seen, were traveling throughout my body.
But now I am back home at what ever is called healthy, I may not be on any one of these apocryphal stages, hurling towards “progression”. Mine has been a round trip, or I have passed “Go” and have been able to collect my prize for the meantime. Of course, I do know that I am really just in a spur line along this journey. Sometime I am likely to be called back into the active mode again, but I will hear that alarm sooner than I did years ago, and I am now bilingual.
But eight (TEN!)years later, all the stats have changed. Rather than the 37,000, we now are quoted 57,000 (61,000) newly diagnosed patients, and still with the loss of our beloved 13,000. There are more of us, but we die less efficiently. Can that also be “progression”? How did I get home again? That story will be told soon.