Life After Radiosurgery

Well, I definitely thought that this less-invasive radiosurgery was going to go extremely well, without problems.  Maybe that's because the doctors had pretty much told us that?

Jared pretty much spent 3-4 days in bed with a headache (which we expected), then he was ready to go back to work after the long holiday weekend.  He did pretty well for a few days, but he was feeling quite a bit of pressure.  He was REALLY fighting having to go back on steroids!!!  But about a week after surgery, he started having multiple seizures, one after another.  I was starting to wonder if they were ever going to go away.  Finally after about two hours of back-to-back seizures, they did stop.  Jared was getting worried and started asking about going to the ER.  As worried as I was, I was pretty sure there was nothing they could do.  The only reason for the ER is if you don't know what's causing the seizures.  We knew he had just had radiation on his brain the week before, that there was more than likely swelling, that he probably needed to be on steroids, and to top that off, he had forgotten to take his anti-seizure meds that morning.  So it was pretty much a recipe for disaster.  I called the doctor the next day and they put him on steroids again.

We did have another MRI in March.  I thought we got to have a two-month break, but his neuro-oncologist wanted to have one a month after surgery.  And unfortunately it looks like MRIs will be every month now.  Anyway, there wasn't anything shocking, he has a hole in his brain again with swelling or fuzzy stuff around it - could include cancer cells - basically the same thing we were told after his original surgery, so nothing new.  He has another MRI towards the end of April. 

This past couple weeks have been pretty stressful.  He keeps getting migraines and minor seizures.  He's pretty much had a constant migraine for the past 5 days.  He also feels a lot of pressure in his head.  So we get to play the guessing game.  (Have I mentioned before that we both HATE the guessing game?  It's not fun!)  I think as of this morning, I finally have it figured out.  Last February (a year ago), they put him on a drug called Topamax in addition to his anti-seizure meds called Keppra.  They added Topamax to get the seizures under control (He was already maxed out on the Keppra dose).  He hated Topamax because it made him feel dumb.  He felt like he couldn't carry a normal conversation.  It also made him lose his appetite.  He got off of Topamax around August because he hadn't had any seizures in a long time, and he was off of the steroids.  Well, Topamax helps seizures but it also helps migraines!  So my theory is that last year when he was tapering off the steroid, he probably would've had seizures and migraines, but the Topamax took care of it.  Again, that's just my best guess.  There are so many different things to try to figure out, and so many different things it could be, it gets stressful!!!  And it's not fun to see him day-after-day feeling horrible.  So I'm trying to talk him into going back on Topamax.  But as of right now, six weeks after radiosurgery, life is still very much a daily struggle.  We were told it would be a four-day struggle, so for some reason we can't catch a break!

Radiosurgery

I haven't had much reason to update until now.  Jared finally had the radiosurgery yesterday.  I don't really know why it was put off so long, but it was.  They finally got the approval from our insurance, then Jared was out of town for a week for work, and they finally scheduled the surgery to take place on February 14th.  He had to go in on the 11th to do all of the pre-surgery stuff.  He got another MRI so they could map out where to do the radiation.  He had an appointment a couple hours later with his old radiation oncologist - he told him that the tumor had grown a little in size and had changed shape.  I don't know if that's normal or not, but it is what it is.  He also got fitted for the mask.

 

We were geared up to go on the 14th, and we got a phone call a couple hours before his scheduled surgery cancelling the procedure because the machines were down.  She didn't know when it would be re-scheduled, she said probably sometime next week.  Jared was not happy about it.  He had taken a day off of work, he really wanted to weekend to recuperate, and he doesn't have much time off of work.  But more importantly, this last week he's been feeling more dizzy and off-balance.  He could feel it rapidly getting worse so he really didn't want to put it off any longer.

 

Yesterday they called and said everything was ready to go!  So a couple hours later we were there getting set up for the procedure! 

 

These pictures, as cool as they are, give me the creeps.  The techs got him all set up, they put on his choice of music, then they went to the other room to watch him on TV screens.  I guess right after I left they took an x-ray, then the radiation doctor came in to look over everything and give the okay.  The whole thing took about 30-40 minutes.  When he came out, he had big lines all over his face from the mask.  We went and had lunch upstairs overlooking the valley, then headed home.

 

So far, it's only been about 24 hours since surgery.  He's had a constant headache and just feels groggy.  We're hoping all of this wears off by Monday.  He's pretty much slept since then, so we expect for him to feel better every day.  All of his symptoms so far are pretty typical.  We're hoping he doesn't show any signs of swelling, or he'll have to get back on steroids.  So far, everything seems to be going well.  From here, I think we just wait until his next MRI, which I think is scheduled in April.  (I'm keeping my fingers crossed that we don't have any more appointments before then! :))

The Plan

I've been meaning to update for quite a while, I just haven't had the time.  And there's quite a bit of new information that I've actually known for a while, so I apologize for the delay!

 

The tumor board of experts got together on Thursday, the 10th, and reviewed Jared's MRI.  They all concluded that it was tumor re-growth, but they also agreed that invasive surgery wasn't the answer...yet.  They decided to do what they call radio-surgery.  It's pretty much gamma knife surgery, but a little different.  We met with the neurosurgeon last Tuesday to go over the details.  It's basically just like a radiation treatment, but much more powerful and precise, with lasers coming from all different angles.  Before they can do the procedure, he will be fitted for a mask to go over his head (just like he did for radiation) and he has to get an MRI and CAT scan.  The actual procedure only takes about 15-20 minutes.  The only side-effect is a possible headache for a day or two, but it's out-patient and really simple.  So it's definitely something we can deal with!

 

The down-sides to this procedure:  It's not as effective as regular surgery, which is a HUGE minus for obvious reasons, and the doctor acted like this is basically just prolonging a more-than-likely future surgery.  So I guess we're just buying time.  My only question or hesitation with the radio-surgery is this:  If the radiation from a year ago causes necrosis or dead tissue in the brain (not good), won't this radiation create even more future problems?  Obviously if it's re-growth, that's the least of their concerns.  And the other question is:  What if this isn't re-growth at all?  I think that question will be answered when he gets his pre-surgery MRI and CAT scan.

 

So we're looking at probably next week for the procedure to take place.  We're still waiting to get pre-approval from the insurance.  It's now been three weeks since the last MRI.  The day before the last MRI he went to a store with his dad and said he REALLY struggled.  He had to sit down after a couple minutes and they had to cut the trip short.  He's noticed this past week that he hasn't been near as dizzy or off-balance.  If the tumor were getting bigger, you'd think his symptoms would be getting worse, and instead, they're improving, but I'm no doctor.  We're definitely hoping and praying for a miracle on this next MRI.  If it still shows additional growth, we need to just have faith and hope that this radio-surgery will do the trick.

 

On the brighter side, Jared got a new Murano a few days ago!  And we love it even more than the old one!  And honestly, we're both doing okay.  We had a really rough first four days, a four days I wouldn't wish on anyone, but we've both been doing much better this last couple weeks.  Jared hasn't been sleeping much, but I think even that's gotten a little better.  Right now we're both anxious to get this procedure over with!

Hope for the Best...

...but expect the worst.  That was kind of my mindset going into this last MRI.  Jared has been feeling a little more "off" lately.  He had a couple days in December where he was feeling a seizure coming on, so he took his medicine to stop them.  The seizures definitely had us concerned - he hasn't had any problems lately, so the onset would possibly mean changes in the brain.  He's also been a little more dizzy lately.  So the past couple weeks we've definitely been more nervous.  So going into the MRI last Thursday, it wasn't that I wasn't hopeful, but I didn't want to get blind-sided.  But the problem with expecting the worst was that the "worst" was much worse than my worst-case scenario, so I would say we were both still blind-sided.

 

The PA was lining up the MRIs to show us the changes from two months ago, last month, and this one.  The one from two months ago didn't really show anything I could see.  The one last month had a little tiny mark, and this one clearly had something, so we both knew immediately this wasn't going to go how we'd hoped.  This "thing" had grown quite a bit in the past month.  To make a long story short, the oncologist told us that it could be one of two things: either necrosis or tumor re-growth, and he recommended immediate surgery.  This is why...  If it is tumor re-growth, it's still small, so surgery wouldn't be AS invasive - it obviously gets more invasive and riskier the bigger a tumor gets.  If it's necrosis, it would be beneficial to get in and clean up the area to prevent potential future damage.  To explain the necrosis side, necrosis is basically dead tissue.  They said that this is about the time that they would start to see necrosis (or damaged tissue in the brain) caused by radiation.  It usually takes about a year for the effects of radiation to start showing up.  And if you have necrosis, it can cause damage to the surrounding brain tissue.  Not always, but it can.  So that was the reasoning for the immediate surgery - to know for sure what it is, and to take care of whatever it is.  He said that it is impossible for doctors to know for absolute certainty what something is based off of an MRI, but that he would guess it is tumor re-growth because necrosis has more of a cloudy look to it, and this appeared more solid.  So this was the plan - he told us to schedule an appointment with the neurosurgeon to discuss the possibility of surgery and to see how invasive it would be and to weigh out the risks and benefits.  He told us that he was going to present the MRI to the "Board of Experts" that meets every Wednesday.  He said that with the big group of neuro experts, they could draw a pretty good conclusion.  So we knew that we weren't going to be making any major decisions until we met with the neurosurgeon, and until we got the group consensus.  The other thing I should mention is that, given all the factors in Jared's case (that the tumor was encapsulated, he's young and healthy, he had the supposedly beneficial infection, etc), they were really surprised to see the possibility of tumor re-growth this early.

 

My plan has always been to research other treatment options if the tumor came back.  So I've been doing my research, and the more I research, the more I get sick to my stomach.  Even the one we were thinking of as a possibility didn't seem to add longevity at all, and would hardly be worth having him move somewhere for treatment. 

 

We met with the neurosurgeon yesterday.  He told us that the surgery would be quite invasive, that it would most definitely cause additional trouble to his already weakened right side, and that he thought it was too early in the game to jump into something so invasive.  He basically said that the risks outweigh the benefits at this point.  He, too, was leaning toward tumor re-growth based off the MRI.  But his thoughts were to give it another month to see what happens.  Or he also said we could consider the gamma knife, which is basically laser surgery.  It's much less invasive, but not as effective.  But again, he said we would know more after the doctors got together.  So this big "meeting" is tomorrow.  

 

So it's been a rough few days at our house. 

 

Last night Jared's dad gave him a very powerful blessing.  It definitely restored my hope, and both of us have felt much better last night and this morning.  So we feel confident that the doctors will lead us in the right direction, whatever that may be.

 

I keep telling myself we've been told tumor re-growth before, and they were wrong.

Lucky.

A few months ago we decided that Jared needed a new car.  He was perfectly happy with his old one, but it was too small.  I would watch him struggle every day to get out of that car.  He needed something bigger.  And he said with his reflexes being a little slower, he wanted something with 4WD to handle in the snow.  So we knew a new car was pretty much a necessity.  I definitely wanted him to feel comfortable driving.  So we got a Murano back in September, and he has LOVED that car!

Last Thursday (Dec. 20th) I got a phone call at about 9am from Jared's phone.  I obviously expected to hear his voice on the other end.  Instead it was another man.  He basically told me that my husband had been in an accident, he was there with him, the ambulance was on it's way, and that he didn't see any blood.  He told me he must have blacked out while driving.  I asked if Jared was conscious.  He said he was, so he put me on the phone with Jared.  I asked him if he had had a seizure, and he told me he hadn't.  I just basically told Jared where to have the ambulance take him so I would know where to go.

I immediately rounded the kids up and threw them in the car and drove to the hospital.  I honestly had no idea what to expect or how bad he would be.  I had the kids wait in the car so I could go in and make sure that they had brought "dad" to the right place.  Jared had just gotten there.  He was completely strapped in from his neck down.  The paramedics told me it looked worse than it was, they said he had to be strapped down as a precautionary measure.  Jared complained of soreness in his back and neck, so they took some x-rays, all of which came back okay.  The policeman arrived and went over the details of the accident with me.  He had two witness statements.  Jared was basically getting off the freeway, and the off-ramp immediately goes from 65mph to 35mph, and Jared didn't see the sign, so by the time he slowed down it was too late.  He went through a ditch, drove across the freeway on-ramp (on-coming traffic), flattened a fence and crashed into a ditch.  He told me that we were lucky that no other cars were involved, and that he was pretty sure the vehicle was totaled because pretty much every airbag deployed.

And that was pretty much it.  He got a ticket for not maintaining control of the vehicle, and we were released from the hospital.  He was really sore, so we stopped to get the drugs prescribed for the stiffness and pain.  As I was walking through the grocery store (waiting for the prescriptions), I was finding it harder and harder to hold back the tears.  I already felt like I was completely beyond my stress limit.  I just couldn't believe this had happened, and to be honest, I was pretty mad, not at Jared, just mad that it had happened when we already have so much to deal with right now already.

Later that day, I looked at the pictures of the accident.  One of the paramedics sent them to Jared's phone.  That was when my frame of mind completely changed, and I realized just how lucky we were.  Lucky he didn't hit another car, lucky another car didn't hit him, lucky he was in a bigger, safer car, lucky he didn't hit his head at all, lucky he didn't hit the tree that was literally touching the side of the car, and extremely lucky he didn't hit the power line just a few feet away.  This really could've been ugly!

So....

We got the results to another MRI this morning.  Basically it was the same thing.  This MRI is showing slight growth from the last one.  The growth is about 1mm, so the doctor says that statistically speaking, he would think that it was, again, caused by a cut in the scan.  He's thinking that it's scar tissue caused from radiation last year.  But he's definitely more concerned this time.

If it is re-growth, it is slow-growing.  They don't want to wait for the tumor to get big again to do surgery, but we would probably be looking at another surgery sometime in the spring.  And we would probably start to look heavily at experimental treatment options.  But that is IF  it is re-growth.  So I guess we make it through the holidays trying not to worry.  The next scan is the first part of January, so we'll try to enjoy the holiday season as if things are normal.  Jared says he's frustrated not to have definite answers, but I will accept this as good news.  Uncertainty, in my opinion, is better than definite horrible news.  So I'll take it!  Happy Birthday to me! :)

Mediocrity

Sad that I constantly find myself wishing for a mediocre life.  And today I got a piece of mediocrity, but it wasn't quite what I was hoping for.

 

Jared had another MRI last night.  He had an appointment this morning to review the slides with the doctor.  He was one of the first appointments of the day, yet he still had to wait TWO HOURS to meet with the doctor!  (Definitely my biggest complaint with Jared's oncologist.  I would say he's a wonderful doctor if he could keep a schedule!!!)  The P.A. came in first and told him that he was going to be frank with him.  There was a spot on the MRI that was growing.

 

After a little while, the oncologist finally came to review the MRI.  The doctor was much more optimistic.  He scrolled through this MRI compared to the last MRI.  As the P.A. had stated, there was a spot that was bigger, but the doctor was pretty confident that the growth was caused by the slides being slightly off from the last MRI, making it appear to be larger.  He wants to do another MRI in three weeks just to be safe.  And as luck would have it, the next appointment just happens to be on my birthday!

 

So this year I would've just hoped for a mediocre birthday.  But we seem to live life in extremes these days.  So this will either be the best birthday ever, or the worst.  And I just read a blog a few weeks ago where a girl my age with cancer was actually expecting to get good news on her birthday, but instead found out that her cancer had spread dramatically.  So unfortunately, I know that birthdays aren't a "free pass."

 

I was really hoping to have a stress-free holiday season to make up for last year.  I guess that just wasn't in the cards for us this year, either!