Gearing Up

The past few days haven't been nearly as bad.  I don't know if the steroid is starting to offer some relief, but Jared has been feeling quite a bit better.  The headaches are pretty much gone, he went to work Thursday for most of the day, Friday he worked from home a little, and today he got up early and headed to work (he came home early, but I wasn't surprised because he isn't sleeping hardly at all!  The steroids are keeping him up all night!).  He's also been going for walks and takes the kids to the park.  He says he still feels dumb, though.  He can't get his thoughts straight.  But definitely a night and day difference from last week, or even a few days ago!

 

I spoke to the neurosurgeon that will be performing the surgery last Wednesday.  He answered most of my questions, but there's still some things that we're not very clear on.  He did go over some of the risks of surgery - possibility of weakening his right side more, but he expected for the surgery to go well and told us to anticipate 2-3 days in the hospital (if everything goes well).  If he needs rehab again, obviously that will be longer.  I would say that's our biggest worry about surgery - weakening his right side.  He's already having a hard time.

 

They are doing another MRI today so that the neurosurgeon can map out his brain prior to surgery.  The surgery is scheduled for 7:00 tomorrow morning.  As I think back to his first surgery, the MRI was done about 20 minutes before, leaving NO time for thorough mapping!!  So that's comforting - I think this neurosurgeon will be more prepared.

 

I keep getting asked the same question - if they are worried about the swelling, isn't another surgery just going to add to the swelling?  Well, that's what I would think.  I'm not really sure, other than my understanding is that they really need to get the swelling under control through medications, and they need to know what they're dealing with to know which medications.

 

So that's where we're at.  In my ideal world, they will see miraculous results in today's MRI and cancel the surgery all-together.  I don't know if that's even in the realm of possibilities, but if they go forward with surgery, I will just accept that this is for the best.  We've had too many prayers in our behalf to second-guess everything.

Answers

I'm actually glad that I posted yesterday.  I will be able to read it back at some point and remember just how panicked and devastated I was in that moment.

 

I wasn't expecting to get many answers at the appointment today, but we did.  I'll try to explain the situation the best I can, but there's a lot of information, and I'm hoping I have it all right!

 

Dr. Colman reviewed the MRI with us.  He explained and showed us the definite change and activity in the brain.  There was a LOT of swelling, it seemed to cover pretty much the entire side of the brain.  He said that the swelling was the reason for all of his cognitive and physical issues.  He said the swelling is now affecting many different areas of the brain, which is causing everything Jared has been going through.  There is some new activity, and it's mostly in the frontal lobe of the left side of his brain.  He says that he's not convinced that the increased activity is tumor, because it looks more broken up than solid, and there isn't really the bright ring around it that he would expect, and that in many aspects of the MRI, it actually showed improvement where he'd expect it to be worse if it were tumor.  But he can't be certain without going in through surgery.

 

Here's the problem.  We've got to get the swelling under control or it's going to cause permanent damage, and the steroids aren't doing it.  If Dr. Colman was certain that the new activity was dead tissue, he would give him a drug called Avastin, and it would take care of it.  If the new activity is tumor or cancer, the Avastin would be the wrong thing to do because it would cause future issues.  So he kind of needs some information (from surgery) to know how to go forward.  So surgery in the immediate future seems to be the plan.

 

Here's another issue:  They can scrape out some tissue in the frontal lobe where the new activity is to get a sample without much problem, which would seem like the easiest solution.  But that very well might be necrosis, where the initial area might have tumor.

 

When the neurosurgeon came in, I told him my concern, and he said he was having the same thoughts before coming in the room.  Is it going to be more beneficial overall to get a sample of the tissue in the frontal lobe, or to actually go into the other, more risky area to get the more-conclusive answers?  I told him we had discussed that we were fine with going into the more risky area as long as the surgery was done while he was awake, in which case they could see if they were causing permanent damage to the right side (physically).  He said that he didn't think Jared would need to be awake, and that there are ways to stimulate the hand during surgery to see if it is causing a reaction (which is usually more effective than someone being awake anyway).

 

So the plan for now is that they are going to discuss the options at their board meeting tomorrow and let us know what they've all concluded.  But it sounds like surgery is pretty definite, probably the first part of next week.  The question is where they are going to "dig."  The neurosurgeon also acted like he could do some extensive mapping of the brain before surgery that would avoid problems. 

 

I feel so much more hopeful right now, today, that it hasn't really crossed my mind that we could still end up with the same devastating news following next week's surgery.  But I'm not going to allow myself to go there.

 

Another thing we talked about to the PA - he told us that if this does happen to be tumor regrowth, they will probably request a sample of the original tumor to analyze it and see if this was a mis-diagnosis because things just aren't going as well as they would've expected with his type of Glioblastoma.  In the back of my mind, I have always questioned the diagnosis.  But in all those months of questioning, it hadn't ever occurred to me that the diagnosis might actually be WORSE than what we were originally told!  But the PA said that if they had a sample of the tumor, they could analyze it themselves and see if maybe he qualified for some experimental stuff they were doing at Huntsman.  So that is positive news.  If Jared hasn't responded to standard treatment, we've GOT to try something else, and in my research there wasn't much else!  So this at least gives us hope that there might be something different that might work for him. 

 

One more side note: (yes, there was a LOT of info!)  The neurosurgeon did say that all of this swelling indicates that his body is at least reacting to the radiosurgery.  That means it's fighting.  He said he is a lot more concerned with a person that doesn't show any reaction at all.  It means the body isn't fighting.

 

So overall, I feel better today.  Actually, I feel much better today.  There is still hope that all of his issues are NOT permanent, there's still hope that this isn't tumor re-growth, and there's still a slight chance of hope that the first one wasn't re-growth, either.  So we have hope!  And that will be enough to get me through this week of waiting.

And now I need to go and prepare another big birthday party for a sweet little thing that turned TWO today!  But today I won't have to fake the smile!

Happy Birthday, Miss Averie!

Definitely reason to smile!

 

Seriously?!

I just read my last post.  It's weird how you think that something was hard, then you fast-forward a couple weeks and realize that what you were going through previously wasn't all that hard compared to where it is now?  Unfortunately that's where we're at.

 

So I tried and tried to get Jared to go on Topamax, but he was determined to just tough it out.  We were actually able to enjoy a fun couple days for Spring Break in St. George, then the following week he was there again for work.  He got back about a week and a half ago and that's about when his major migraine started.  Usually he'll have a migraine, but it will go away after a while after taking some medicine.  This one wasn't going away.  It started last Sunday.  Monday he was flat on his back all day.  Tuesday he forced himself to go to work, but called me a couple hours later to pick him up.  He was NOT doing well.  I told him to call his doctor and he picked up his cell and couldn't even figure out how to dial the number.  He also threw up all over the bed and didn't even realize it.  At that point I had talked him into going on Topamax.  He decided that as much as he felt like he couldn't function on Topamax, that level of functioning was greater than this level of functioning.  So I called the doctor and they called in the prescription, which he started taking that night.  Wed. the migraine continued, Thurs. the same, and he knew he had to go to work Friday.  He had some meetings he said he couldn't miss, but didn't know how he was ever going to pull it off.  I managed to get a migraine pill, made sure it was safe with all his other meds, and he took it Thurs. night.  He had a little relief, but the migraine was still there Friday when he went to work.  He lasted a miraculous 4 hours, but started throwing up, and I went to get him.  I again called the doctor's to see if we could get some actual migraine medication.  The PA, Shawn, called and asked me what was going on, and insisted that he bump his steroid dose way up, and said he should be feeling better the following day, and told me to call him with an update Saturday.  When the migraine still wasn't gone Saturday evening, I called Shawn back.  He told me that I needed to take him into the ER to get a migraine shot, but also told me to insist on an MRI while I was there since we had one coming up in a couple days anyway (he didn't necessarily think the MRI was needed, he just said we might as well).  So we headed up to the ER at about 7:00 Saturday night.  The doctors in the ER were going to send us home without the MRI, but we pushed it a little, so they gave in.  We didn't know it was going to take so long!  He did get the headache concoction, so he started getting some relief.  A little later they added morphine, which helped even more.  He said his pain was finally down to about a 4 - the lowest it had been in a week! 

 

We got the results of the MRI at about 1:30am (me knowing that I have to teach a class that I haven't prepared for at 9:30 in the morning!), the doctor said that there was extreme swelling in his brain and told us we needed to sky-rocket his dose of steroids back to the maximum dose (he had slowly tapered himself down to a 1/2 mg/day and they pushed it back to 16mg/day).  They also said there was sign of new cancer/tumor activity.  I think we both turned our brains off after that sentence.  It was so late and I just didn't care to process it.  We also knew we had an upcoming appointment with the oncologist to discuss everything, so we didn't push for anymore information. 

Someone was obviously excited for his cake!
(He insisted on a cake that looks like a wheel.)

Sunday (yesterday) was Drew's B-day, so we tried to keep a big smile for his big day.  He had been counting how many "sleeps til his birthday" for quite a while.  So we tried to enjoy ourselves.  And Jared was feeling the best he had in quite a while, and could actually carry a normal, coherent conversation, which was a nice change.

 

Happy Birthday Drewy!

Today has been another rough one.  The headache is tolerable, but he is completely out of it.  He couldn't figure out how to turn off the alarm this morning, he fell in the bathroom when he was trying to get ready for work, he walks like he's drunk, and he tried to text his brother and wrote something that looked like Averie had gotten the phone, and he told me he thought he had written "just tell me when and where."  So I obviously didn't let him go to work.

I honestly don't know what to think or expect at this point.  I really hope that this is temporary.  I don't know that the doctors will have any answers in the morning, I don't know if it will get better, I don't know what the course of action will be (although I'm pretty sure they are going to recommend surgery - something I'm not thrilled about jumping into when he's already doing so horribly).

 

But the biggest frustration is that the radiosurgery only "bought" two months!!??  We both really thought it would be longer - 5, 6, 7, even 8 months?  This is really discouraging, to say the least.

 

I will report again once we hear what the oncologist has to say in the morning.