Once again, I find myself in the position of having to thank all of you for your kind words, thoughts, prayers, offers of help, encouragement, and overall matching sentiment regarding the latest crap sandwich entry of our life. Also once again, I freely acknowledge that another day or two of pouting, sulking, and licking my wounds in general should be enough .... then I'll make an earnest attempt to re-join civilization with a better attitude. Or in other words, answer my phone and respond to e-mails and basically behave like a human being without a ginormous chip on my shoulder.
Brayden came home from school today running a fever and with what is probably strep throat. Considering she is the one child of mine who would go to school carrying her severed head in a bag rather than foil her attempt at perfect attendance for the year, I knew when she voluntarily went to the nurse that she didn't feel well, for realsies. Having her home with me today wasn't any trouble at all, but it meant I was unable to visit much with Blaine after his consultation appointment, let alone attend it with him. Actually, I hadn't planned on attending the appointment regardless because we were under the impression it was a quickie appointment to simply schedule his next cat scan.
Naturally, we were wrong.
And because Blaine is a man, and therefore doesn't feel the need to ask a bazillion questions like I would and hash everything to death with the doctor, I am left with an overall feeling of "what the heck is happening here ....... " Of course, I've felt that way just a little bit ever since his first diagnosis -- SIX FREAKING YEARS AGO -- so really, what's new?
Here's what we know:
1. The last round of radiation did work. Or at least seems to have worked. The three tumors they hit this past fall all appear dormant on the pet scan. That's the good news --- We'll take blessings any place we can get it.
2. Two new spots lit up on the scan. (this is the bad news, in case you weren't sure ..... )
One showed up during the scan at the base of the tongue, but because he ain't got no spit, his throat reflexively moves a lot involuntarily. The doctors suspected the spot on the scan indicated movement instead of tumor. I guess during a scan you are instructed to lie perfectly still (I've never had one ... in fact, the closest I've come is probably lying in a tanning bed ....) and if you don't lie perfectly still, any movement will trigger a flare on the scan. While I was in the office, and doing my valiant best to portray myself as a loving, concerned wife whose primary goal in life is to support my husband, I watched as the doctor ran a camera up his nose and through his nasal cavity and then down his throat to look at the back of his tongue ... quite frankly, it was disgusting and I thought seriously about heaving. But the good news was the tongue looked all clear. (ugh ..... gagging a little just remembering ...)
The second spot, the cause for worry, is a new tumor located directly behind his right eye, in the brain cavity. I said to the doctor (because in times of crisis I have the diplomacy and tact of a bull in a china shop) "so basically he has brain cancer now, is what you're telling us?" and the doctor responded with, "No, he does not have a brain tumor. He has a tumor in his brain."
OK, glad we got that cleared up.
Several things were discussed on Tuesday when we got the news. Then, a brand-new doctor came in today, and several different things were discussed. The different doctors are suggesting alternate plans, and not only are we not sure which plan is best, we're not even sure which doctor is in charge, or makes the decision, or has the plan we think we want. (This is the part where it would have been helpful had Blaine actually developed e.s.p. and asked the questions I thought of hours later .... but you know, since he DIDN'T, we're left wondering .....)
One doctor says Blaine really needs an MRI but can't have one due to the metal posts in his head, so instead he'll have a cat scan. The other doctor says having the MRI would be fine.
One doctor says it's most likely a metastasis of the same cancer that afflicted his sinus cavity and since radiation worked before, we should do that again.
One doctor says it might *not* be the same cancer and because treatment options would drastically depend on the type of cancer, a biopsy is necessary to determine. That means basically drilling a hole in the back of his head and going around to the front of the brain to the location of the tumor to get a sample to test. Then, upon determining cancer type, additional radiation, a different kind of radiation, or even chemotherapy might be an option.
A few questions Blaine and I have:
1. If you're going all the way in there to biopsy the tumor, why don't you just cut the damn thing out? I mean, it makes sense to me, but then again, I wasn't paying attention that day in neurosurgery school, so what the heck do I know?
2. We've heard previous mention of lifetime radiation maximum dosages ... is he getting close? Does it matter? Who would decide? Why is the sky blue?
3. We get it, we really, really do, that the nature of the beast is such that by the time a tumor is big enough to show up on a scan, so we can target it and kill it off with therapy, that often, enough time has elapsed that cancer cells have already potentially moved on and starting making progress elsewhere. The doctor said (and I quote) "it's like shooting rats in the galley .... you just keep shooting and hope eventually you kill the last rat before they leave babies behind to cause trouble." Perhaps not the most graceful analogy in the world, but it makes sense. But is there anything we can do, anything at all, to ensure THIS TIME is the final time and we get the last fucking rat?
4. How come one doctor says an MRI is ok and one doctor says it is not? As I understand it, an MRI is basically a huge magnet .... are the metal things in his head going to shoot out through his nose if he has one done? Or will his whole head shoot up and stick to the magnet?
5. What in the sam-holy-hell is the difference between a brain tumor and a tumor in the brain?
6. Did I really think that eating an entire box of Samoas girl scout cookies, and a sleeve of Thin Mints --- IN ONE SETTING --- (oh, yes, I did) was going to help last night? All it did was give me a terrible stomach-ache and cause me to wake up in a cold sweat and near-diabetic coma during the night. Truly, not one of my more brilliant moves.
Now, before any of you post in the comment section about what is wrong with these doctors and why are we getting conflicting advice and how are we supposed to make decisions ............... please understand that we have complete confidence in the medical team here. It's still a little unsettling to be treated in a 'new' place after being treated for five years with the same people in Georgia, but we like them. Their office and nurses and administrative staff have been nothing but kind and competent. Most importantly, the first round of treatment they suggested and administered --- worked. (see: currently dormant tumors in his cheeks and nasal cavity.) So we trust that the right decisions will be made this time as well, and that we'll be a part of that decision making process, also. It's simply that there is a medical TEAM taking care of Blaine ... so far, he's got one Head and Neck Oncology Surgeon on board, two Radiation Oncologists (and their two residents) considering the best plan, and as of this week, the "Brain Lab" people are coming on board. ("Brain Lab" ... makes me think of some mad scientist with crazy hair, rubbing his hands together gleefully and muttering wildly under their breath, doesn't it?) .... and that's just at this one facility.
The way they have treated Blaine, both as a patient, and as a human being, to date, has done nothing but earn our trust and respect. So please understand I'm not here complaining about the varying degrees of information we are receiving. It's simply that the TEAM hasn't come together yet and decided on the best possible plan. The waiting, for me, is the hard part. I want to know what are we going to do and when are we going to do it and how are we going to do it and what will happen when its done and then what we will do next and I want to know it YESTERDAY.
Several people asked in the comments for more specific information so they can pray more specific prayers. I'm all about that. It's just that for now, ideas are being bounced around and things are being considered and nothing has been totally positively determined and to be fair, I thought I'd take everything we know, and everything we don't know, and throw it out there in a big, giant, heaving, conflicting, confusing, vomitous mass of information.