The Next Day (aka Matt's Birthday) - Mostly a Waiting Game and Lots of Technical Details...

We got to talk to two doctors this morning, both neurosurgeons.  They said basically the same thing (shocking, I know) but each gave slightly different details about the growth and what surgery would look like.  Rather than try to keep track of who said what, I'll summarize (and add in a few details that the assistant came back later and filled us in on - she also let us ask a million and three questions, so we got lots more info from her about possible outcomes/further treatments and potential successes/failures of surgery)

So, it's a growth (I think they called it a tumor - not quite sure about that).  It's about the size of a small fist - more my sized fist than Mark's - and it's about as center in the brain as you can get.  It started near/on the thalamus and grew up from there into the spinal ventricles.  There are a few different kinds it can be, but they won't know which kind until they take it out and biopsy it.  It can either be a fast or slow growing mass and it can either be benign or aggressive.  Based on how big it is and the fact that he hasn't had any symptoms until very recently they're thinking it grew slowly, over many years.  Apparently the brain doesn't much like rapid change and if it had grown quickly, he should have had more symptoms before now.  I like the sound of slow growth (I'm not sure I should, but when the doctors talked about it, it sounded like it was good thing, so therefore I like it).

Depending on how it's growing lower down in his brain - where it's right on the thalamus - will determine how the rest of the plan will work.  If there is a definitive difference between where the tumor ends and the brain begins, they'll take it all out and recovery should be fairly easy (again, depending on wether it's a fast or slow growing mass and wether it comes back).  If the mass is spreading 'tentacles' into the thalamus then they will get what they can and once they have to start guessing what's tumor and what's brain, they'll stop.  Apparently the thalamus is a 'collection point' for a lot of what the brain does, and they don't like to mess with that - it can cause all sorts of problems to start poking around in that part of the brain.  If they have to leave some in, then depending on what type of growth pattern it has, they would do either radiation or chemo beginning 2-4 weeks out to get the rest of it (they wait to let the incision heal - faster growing ones start sooner, slower growing ones get to recover longer).  Radiation would be about 4 weeks of treatment Monday thru Friday for about half an hour a day (except the first day when they get all the settings and stuff set up).  Radiation to the brain tends to have few side effects except for appetite (the assistant who gave us all this info wasn't really familiar with all those details because she's more involved with the surgery part and not so much the follow up part, so she knows the 'how's but not so much of the 'what happens then's of that part).  Chemo is incredibly targeted and is just a pill that he would take.  It wouldn't even cause hair loss (although I don't think he's too worried about that part :) ).

Again - none of what happens next will be known until after the surgery.  Any/all/none of these could be an option - or something all together different.  It all depends on how much they get out, and what kind of growth it is and how he reacts to the surgery...

One thing is known for certain:  Scans.  Lots of them.  Pretty much forever more.  They'll scan his brain again at 3 months, 6 months, 9 months (that might have been 12 months) and then yearly after that pretty much forever.  She did say that if he goes for 15 or so years with out further growths they might give him a break on the scans - like he might be able to take a year off... :)

The assistant doesn't really like to call brain masses cancer, because of how typical cancer acts.  Typical cancer when it metastasizes, will spread to other parts of the body - kidneys, lungs, lymph nodes, brain, etc.  Masses that start in the brain don't really spread past the blood brain barrier.  Tumors in the brain can be 'aggressive' but they stay in the brain.  The only reason this is relevant is because it means that unless there is good reason to look for cancer elsewhere (symptoms or lab work), they're not even going to look for it.  So, we can pretty much rest assured that what we've seen so far is all there is to see on that front.

Once surgery is done, he'll go to ICU for the first day or two - standard procedure for cranial operations - and do a bit of recovery there.  Once he's well enough they'll move him back to a regular room where he'll finish out his stay.  I think we're expecting about a week (probably a day or so less) of a stay until he's ready to come home - again, depending on how surgery goes.  There is a chance that he could end up needing some kind of rehab, but from what I've gathered it's not a super likely chance, so I'm going with him not needing that until they tell me otherwise.

The assistant did mention that for the first while - at least a month - patients are often really tired and it can take up to 6 months for what they consider a complete recovery (not sure what all that entails, but probably a return to before surgery levels of energy at least - not sure if that means he'll be back to normal in 6 months or just done with as much recovering as can be expected in 6 months.  Guess we'll find out :) )

For the surgery, they are going to cut a hole right on the top of his head and cut it fairly central from front to back (kind of like how you would part a girls hair to do pig tails).  I don't know how big that incision will be, but that's where it will be.  They will spread the two halves of the brain apart and they will have to cut about 1/3 of the corpus callosum (the part of the brain that connects the two halves) and then start digging out tumor.

They are taking him down a bit early - about 6:00 or so - to do some prep work for the surgery.  They'll shave his head and put on some 'stickers' that faintly resemble squishy life savers (at least that's how it was described them to me - I'll have pictures tomorrow and if I can find a way to get them online I'll post them).  They use these as markers and once they're on they will do a 'mini MRI' and use the info they gather from that as a sort of digital map of his brain.  Once in the operating room they have some kind of gadget they use in conjunction with the markers to allow them to see the brain better and basically use them to help them see how and where they are working.  I'm not super clear on all the specific technical details, but that's the picture I got from how they've explained it.

He is second on the list for surgery tomorrow (or really, I guess it's later this morning, since it's technically now 'tomorrow') so they're expecting to get him around 11 or so.  Surgery can take anywhere from 2-4 hours (the surgeon said 2-3, the assistant said based on the location and size that 3-4 was more likely, we'll just wait and see what happens - not much I can do to chance any of that, so whatever happens we will have to be ok with).



Ok, technical boring part done.  Today was actually pretty awesome - at least as awesome as it can be sitting in a hospital room waiting to find out what's about to happen to the rest of your life with no real way to speed up the waiting game.  My mom flew into town and we got to see her for a bit before she went to relieve Doug who had been watching our kids for us.  Doug has been awesome!  He was in the middle of moving into a new apartment when all this started, and instead of ...unpacking, grocery shopping, showering, changing clothes, planning his next semester of school (that starts today!)... he stayed with our kids and put off all of that so we could be here.  He and Nate got the kids in bed last night, then Doug spent the night at the house, got the kids off to school, dealt with Annie who would have nothing to do with him...  You know you're loved when a college student with much better things to do would do all that for you, for nothing more than knowing that we needed help.  So, Mom went to go take over so he could spend time doing some much needed - and much delayed - organizing of his life.

Cindy showed up, out of the blue!  I had been worried about finding a way to have someone watch the kids so that Mom could be here at the hospital while Mark was in surgery.  I had basically given up trying and was going to be grateful that she was willing to watch the kids for us and call that good.  But Cindy showing up was an answer to prayers!  She will watch the kids for us!  And apparently Annie will actually interact with her, so that's a good thing... (Annie actually kept choosing Aunt Grandma over me when they came to visit this afternoon - I was trying to get a hug or kiss from her, but she kept walking past me and straight to Cindy.  It might have had something to do with the Oreo's she was holding, but I doubt it...)

We had all kinds of visitors here today.  Cousins we both have and haven't seen in a while, friends we know and love but weren't expecting them to take time out of their day to come by, church members just checking in to see if we needed anything.  This evening was a bit crazy with the room almost to overflowing with family and friends.  We took advantage of the men in the room and had blessings all around - Mark, me, his parents and sister.  It's amazing to watch men using their priesthood to help others.  We were glad everyone came, and glad everyone stayed, but it was also nice to have a quite evening to ourselves for a bit - possibly our last 'normal' one for a while.

Random coincidence!  I got a call from my visiting teacher checking in on us to see how we were doing.  It came up in conversation that her mother also had recently had brain surgery and needed a bit of follow up due to some fluid build up.  I had heard a story very similar to that when the doctor was talking about other surgeries he had done with growths in a similar spot and size to Mark's.  Turns out the woman the doctor was talking about is the same woman who is also my visiting teacher's mother.  And she's having surgery the same day and the same hospital and with the same doctors as Mark.  We figured out that my visiting teacher's mother is the one who is going into surgery before Mark.  She sure has her plate full of brain surgeries this week...

So, that's about all that's been going on here.  Learning what's happening tomorrow and getting visits from lots of people.  Not an overly busy day in terms of new things happening - I'm going to call that a good thing at this point.

Further updates probably won't happen until after surgery and we've had a chance to chat with the surgeon to see how things went - maybe even talk to Mark and see how he's doing.  I'm thinking sometime mid to late afternoon...  If there's anything urgent I'll send out an e-mail update (or more likely, have Mom do it), otherwise 'no news is good news'.