Tomorrow, we will leave for Wisconsin, and I will begin preparing for my whole body PET/CT scans, which are scheduled for Friday. This feels like SOMETHING to me - even though it's just a test. I've been reading the scientific literature and the support boards, non-stop. It feels like this test will probably give us answers that I've been asking for two years. WHERE ARE YOU, CANCER??
As I do, I have played out every scenario in my mind. There are three potential results from this test, and I have mentally prepared myself to hear any of them, so that I'm not taken off-guard. It's how I've managed all of this thus far - prepare for the worst, and you can only be pleasantly surprised by good news (or at least not shocked by the bad news). Mostly, it works. But it's still a nerve-wracking mental exercise.
Scenario 1: PET scan and/or CT scan picks up metastasis to lymph nodes in my neck. To me, this is the best possible outcome, although it doesn't seem so on first glance. Metastasis to the cervical lymph nodes are common in my type of cancer, and don't generally change prognosis. They are usually easily excised with a neck dissection (that term sounds TERRIBLE). If cancer is in the lymph nodes, they can be removed and cancer is GONE. This is usually followed in most centers by another round of radioactive iodine. But this is a path to CURE. And has a definitive protocol, an action plan. So in my mind, if this stuff insists on being here this long after my first treatment... I'd like it to show itself in an easily accessible way, so it can be conquered.
Scenario 2: PET scan and CT scan shows nothing. This is the result I fear is most likely to happen, and I dread it because it continues the unknown. If these scans are negative, it doesn't mean that cancer is not there. The tumor marker says otherwise, so we know it's there. A negative PET/CT means that we still can't FIND it, and that does not give us a target to attack. This result means that there's more interminable "watching and waiting". This result means status quo and inaction, and uncertainty. I've been in that place for two years now. I don't want to be here any more. So, if this is the result, I've decided to seek a second opinion at Mayo Clinic, and get fresh eyes, and a fresh perspective on everything, by some of the best clinicians in the nation. At least I will have a plan in the event of scenario 2. Second opinion.
Scenario 3: PET scan and/or CT scan shows metastasis anywhere outside a lymph node in the neck, or anywhere outside the neck. This is the worst news result, the one that we absolutely don't want. This is the scenario where prognosis takes a steep plunge in the downward direction, and treatment gets a whole lot harder than a little surgery and staying in my room isolated for a week. Depending on location, such a tumor may or may not be a surgical candidate. This is where external beam radiation for weeks on end and clinical trials come in to play. This is where I would definitively transfer my care to Mayo Clinic, and put on my battle gear. But I'm not going to dwell on scenario 3, because... I don't want to. I'm staying positive. And the other two scenarios are far more likely anyway. We'll deal with scenario 3 if it comes, but I will not live there.
I am NOT dying (at least … not any more than any of us are marching towards our end), but I have been thinking about my death lately. Maybe that's inevitable with all of this. I have prayed for a happy death one day, with my family by my side. And I am not afraid to die. So I can honestly say "Lord, thy will be done". I do not want to leave my children before my work with them is through, and I do not think that the Lord will ask that of me. But if He DOES... thy will be done. None of us are guaranteed anything in this life. This place is temporary for 100% of us. So there is peace with that.
Prayers are appreciated, and actively sought.
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