I've started this post a few times, but feel like I have so much I want to say, and my mental flurry combined with my lack of sleep last night has me a bit unfocused- apologies in advance if my thoughts come out in a semi-coherent jumble.
I'll start with this: surgery has been scheduled. Kenny will be going under the knife on September 26 (as in less than two weeks) at Memorial Sloan Kettering. Now I'll back track so you know how we got there...
Last I wrote, we were on our way into the city to receive the results of a couple of tests the surgeon wanted done. She's a "planner", this surgeon, and while these tests are never entirely conclusive (nothing is more informative than actual surgery and pathology of the tumor); they better help her to give us information and ammo to make our decision, and help her map out her game plan. We breathed a sigh of relief to hear the PET still pointed to a low grade glioma, and the functional MRI helped her to better pinpoint what area of the brain his tumor is in. We thought once we had these results and got to speak to this surgeon on more time, we'd have our clear cut decision; instead, we left feeling confused about which direction to head.
While the scans did, technically, give us "good news" in terms of the tumor's grade and size, she said she felt she was only going to be able to remove about 50% of the tumor without affecting his ability to speak. This isn't the first time we've heard from one of these doctors that, because of the location, they may not be able to remove all of it. Every.single.doctor we have seen has mentioned that he will likely have transient loss of movement on the right side of his body (or perhaps just a sort of weakness); however, none of them were worried about this because, apparently, the other side of the brain would likely "re-wire" itself to start handling it (a built in contingency plan, if you will). I asked the doctor why it would not be the same for speech, and she explained that the speech function doesn't work the same as movement, and the other side couldn't "rewire" to regenerate his speech. Essentially, if his speech is lost, it could very well remain lost. Being a 31 year old father of two young kids with a lifetime ahead of him (God willing and the Creek don't rise), losing his ability to speak wasn't a great option. That's when she told us she'd like to do language mapping during the craniotomy.
Language mapping is when the patient is awake (yes, awake!!!); it's some one's job to converse with him the entire duration of the surgery, while the surgeon "probes" the areas of the tumor she suspects are on the area that controls his decision to speak. While probing, they can detect slight changes in his speech (probably nothing most of us would notice), and would be able to avoid those areas when removing the tumor (preserving his speech). While we knew both surgeons would want to do cortical mapping (using electrodes to test brain responses for motor function), this was the first someone had really pushed on the language mapping (although it wasn't the first time it had come up).
SO- after all this talk, weeks of interviews, and tests galore- it came down to this...go with the surgeon who wanted language mapping or the one who didn't. When we couldn't seem to come to a consensus, I suggested to Kenny that maybe he should involve his oncologist; sometimes you need an outsider's perspective to help you decide- obviously his family and I are a bit "close to the project" to remain objective. All it took was one phone call and a few sentences from the oncologist, and his mind was made up: he is going to Sloan, and he's going to be awake during his neurosurgery (GULP).
As for how I feel about Dr. Tabar? My OCD has me terrified to say as much, but I like her...a lot. I very much respect and admire the local surgeon we met, and I have no reservations about him whatsoever- had Kenny opted to choose him I wouldn't have blinked an eyelash about it- he's brilliant; but I felt a connection to Dr. Tabar- you know when you just kind of feel it in your gut? Of course, I'm terrified to be wrong, but confident decision making has never been my thing (I'm queen of the second guessers)- so I didn't push Kenny one iota- in the end he is the one who needs to be confident in his surgeon, because he's trusting them with his life.
While she and the local surgeon said a lot of the same things in terms of diagnosis and treatment, their approaches were quite different. I couldn't really pinpoint what seemed SO different between the two, but soon realized that his involvement would be a different level just because of where they work and how they operate (figuratively, not literally, although even literally it's a little different). His approach was a bit more sunshine and rainbows...surgery, minimal risk, hopefully get most of it, move on with life easy peasy; his involvement with Kenny really ends with surgery (minus two post op check ups). He wouldn't be involved in any additional treatment or follow up scans, unless it required additional operations. There's nothing wrong with that, and I'm pretty sure that is how most neurosurgeons work- they perform their surgeries and refer their patients out to other specialists as needed; he doesn't actually work at any specific hospital, but is a surgeon with rights to perform surgery at specific hospitals (I hope this is making sense).
The difference with Sloan (and Dr. Tabar), is that they work for Sloan- every nurse, surgeon and neurologist works there- they're part of one major team. The communication between all we've met appear to be seamless; the oncologist, surgeon and nurse team that we're in contact are all totally aware and "in the know." While I sometimes find it a little scary, Dr. Tabar's approach is a bit more pragmatic; she uses words no one wants to hear about their husband, like "life expectancy" and "remission." She is looking at the bigger picture not necessarily because she cares more than the other surgeon does, but because of where she works- one of the world's most renowned cancer hospitals. That's what so scary about those words...they sound, well, cancerous. While they believe the tumor to be benign (and we're certainly hoping they're right), they are likely not going to be able to remove all of it, and even if they could, it could grow back (at a "higher grade"- ie, more dangerous); and as Dr. Tabar explained to us, removing "all of it" is misleading, in and of itself. When a surgeon says they can remove all of a brain tumor, they mean the "body" of the tumor. She likened the tumor to a spider, as a body with a bunch of long, stringy legs...she can remove the body of the spider, but the long, stringy legs will remain, leaving room for them to grow their own little tumors or cause little issues themselves. So while this surgery is going to help, and is a step in the right direction, it's, by no means, the end of our journey.
So there it is...I hope I was able to explain it well enough. After all the talk and decisions being made this week, we were a little bit spent; but Thursday we had some friendly faces visit which was a really nice distraction. Even though a bit of a weight has been lifted since Kenny made his decision, with only a week and a half until surgery, we have some details to iron out and some things to do. He has a couple of pre op testing appointments and a final consult, we have to find a hotel for the 5 nights we'll be in the city, and we have to sort out childcare while we are in NY (we are bringing the kids since where we live is too far for me to go back and forth for Benjamin, and it's just easier to have them with me- but since most of us will be at the hospital with Kenny during the day, we'll need some babysitters- any takers??? hehehe). But for now, I think we're just going to try to enjoy the weekend before we finalize our plans next week. I'll do my best to check in as things progress.
As always, thank you all SO SO SO incredibly much for your continued positive thoughts and prayers coming our way, we can't say enough how much we appreciate them!! XOXO!
Thinking about you, Megan! Much love to you!
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