Catch-up Time

So much to catch up on, I don't know where to begin..

 

I guess I'll start with Brynlee.  Some of our friends nominated Brynlee to be a "Forever Princess" at a Princess Festival at Thanksgiving Point.  She was very honored and excited!  I would definitely concur that she is worthy of the title.  She has been a huge help this past couple years and I don't know what I'd do without her!  The Princess Festival definitely made her feel like a princess for the day!

 

 

Now moving on to Jared.  About 3-4 weeks ago I realized that Jared's sense of humor hadn't returned since the surgery.  I casually mentioned it to him, and he agreed.  It's not like he's a different person (which is why it took me a while to notice), but he seemed a lot more serious and almost TOO polite.  I guess that's not bad, it's just different than what I'm used to. :)  We had a get-together with some of our college friends a couple weeks ago, so I told him he had a few days to get his sense of humor back before we met up with our friends, which we both laughed about.

 

Love these guys!  We are so lucky to have made
life-long friends while attending school.

Well, his sense of humor is returning, slowly but surely.  A couple nights ago he asked me where the toenail clippers were.  I got them for him, and the next morning I found his little pile of toenails - they were the longest things I've ever seen!!  So bad that I made Brynlee throw them away.  I texted him and told him I had found his collection of toenails, and that IT WAS DISGUSTING!!!  He responded, "That was meant to be a gift."  The old Jared is back!

 

Jared returned back to work a couple weeks ago.  Today now completes his third week back.  His first day he went to the office and made it about 5 hours, which was pretty good for him.  The rest of the week they allowed him to work from home, which was nice.  He had a really hard time sitting up for long periods of time.  He kept getting headaches and had to go lay down.  He was scheduled the following week to work in Park City, which is about 45 minutes away.  I told him I didn't think it was a good idea and told him to try to get re-assigned to somewhere closer.  He said that a co-worker was going to take him and bring him home (which was WAY out of the way for the co-worker), but I was worried that he wasn't going to make it for such long days.  But he was determined.  The first day he came home with blood on his shirt.  He had blacked out as he stood up for lunch, and his hand was gripping something, so it basically ripped his finger on the way down.  He said he thinks he was out for a couple minutes.  The next day he blacked out again, this time not as bad, and he just fell to his knees.  The third day he called me about the time I expected him home and told me that he was at a Wendy's waiting for his ride to the REAL soccer game (the professional team here).  I was NOT okay with it!  He had just put in an exhausting day at work, but he said that he had already committed to go, and that he was going.  I was really worried about him blacking out at the stadium!  I honestly thought I would get a call that night to rush to the ER.  But he did it.  He left at 8am and got home at about 10pm.  So he's been putting in LONG, hard days.  He struggles every day.  I hate sending him to work because I know he's having a hard time, but he's determined.  I'm certainly grateful for his sacrifice on our family's behalf.

 

So we're hanging in there, taking it one day at a time.  We won't have any real news until the end of July when we get the results from another MRI.  We are just grateful right now that he is tolerating the treatments okay.

Annoyed!

Jared had his second treatment today.  We were told that this treatment would take an hour.  With the kids being out for summer, I figured we would all go and just drop him off, then go find a McDonalds or something with a play area to kill time.  I figured an hour couldn't be too bad.  We got the kids up at 7:45 and headed out at 8:15.  He got to his appointment at 9:00, and we found a McDonalds.  At about 10:00, I texted him to see what the plan was.  He hadn't even started getting the Avastin yet.  I thought he was kidding.  The kids were already sick of the play area.  So I got gas, cleaned the windows REALLY good to take up more time, and at 10:30 they STILL hadn't started.  So I rented a movie at Redbox and drove back to Huntsman Cancer Institute and parked in the parking garage.  I figured the kids could just watch the movie.  Averie started crying after we parked.  At 11:00, 2 HOURS later, they still hadn't started.  So I decided to take Averie with me and go and find out the problem.  I left the other kids in the car to watch the movie.  When I got to the Infusion check-in desk, they told me I couldn't go back because kids under 12 weren't allowed back there.  So I told them I had been waiting for two hours with four kids and wanted to know why the infusion hadn't started.  They said the pharmacy still hadn't given them the medicine.  (The pharmacy that is located ONE FLOOR below them!)  I was about to go and push the pharmacy along, but realized I needed to get back to the car.  I was worried DCFS would be waiting for me!

 

At 11:45 I got a text that they had started the infusion.  For those of you who aren't good at math, that is 2 HOURS and 45 MINUTES of pure waiting to get the treatment we knew would take an additional hour!!!  So I got the kids out of the car and took them all inside Huntsman to go to the bathroom and look out the windows of the entire Salt Lake Valley.  By this point they were all worn out and fighting and causing problems.  And everyone in the building was staring at us.  So we got back in the car and I decided to drive around since Averie didn't like just sitting and watching a movie.  I found a little park right across the street from the U of U Frat Houses, so I stopped to let the kids out.  A lady came up and told me that they give free lunches to kids at the park until 1:00pm, so my kids got a little sack lunch and thought it was great!  So finally when I had the kids completely content, he texted and told me he was done.  It was 12:45pm.  By the time I picked him up and drove home it was 2:00pm.  Six hours of torture for a one-hour infusion. 

 

And to top it off, his lab work came back showing his calcium was too low, so he doesn't get to start his Vorinostat today.  We have to go BACK to Hunstman Monday to get more labs, and if they're okay he can start a partial dose.

 

Sometimes I wonder how much more of this I can handle!  Obviously if it works, it will all be worth it.

the REAL Jared

Sometimes I get sick of writing about stupid cancer.  So today I thought it would be fun for a change to tell some of my favorite stories about Jared.

 

Jared is such a funny person!  But he's not loud and obnoxious, he's actually pretty quiet and reserved.  But I hear the same thing over and over from everyone that knows him...  He's one of the funniest people they've ever met! 

 

He's also really bright.  He's one of those people that knows a lot about a lot.  He also has a great ability to reason through problems to figure out the right answer.  When we were first married and both in college, we were both getting a degree in business, but I was ahead of him in school.  So I had already taken many of the classes that he was taking.  And because I had taken them, I knew how hard they were and it would stress me out that he would leave all of his studying until last minute!!!  I would always tell him that I had taken the class, that it wasn't one of those classes you can cram the studying in last minute, but he would anyway.  And he would ALWAYS pull a higher grade than I did!  Some of the classes he would take online, so he wouldn't do anything at all until a couple days before the semester was ending.  Even the most flunked classes in the business department, he would cram everything last second and still pull out an A- or B+. 

 

As I said before, Jared is pretty quiet and reserved.  When we got married, his sister would always ask me if my family knew the REAL Jared.  For the first couple years, the answer was no.  It took a couple years for him to warm up and start showing his true personality around them.

 

So what is his true personality?  I will share a couple of my favorite stories.

 

Jared got through college working at a place called Convergys.  It was an inbound call center, and the workers would answer phone calls from angry Sprint cell phone customers.  Most people (myself included) only lasted a couple months.  It was miserable work!  But Jared didn't mind it.  In fact, he always told me the angrier the customer, the better.  He had figured out whether his calls were being monitored or not.  So he usually had fun with it.  For example, he told me a lady called in and told him she was mad her phone was turned off, and that she "wanted something did about it!"  He replied, "Ma'am, you mean you want something DONE about it?"  She would say, "That's right!!  I want something DID about it!"  He would correct her again by saying, "You mean you want something DONE about it."  She never caught on.

 

But my favorite phone conversation that he told me about was a guy who was so mad that he told Jared if he didn't get the cell phone turned back on immediately, he would take the phone and shove it up his A$%!!!  And Jared calmly replied, "Well, sir, I'm pretty sure that would void out your warranty!"

 

The next story is another college experience.  In the winters, the Utah State campus would get icy.  Especially right outside the business building.  He had stuffed his pockets one morning with Starburst to eat during class.  He walked over an ice patch, and his feet flew up and he fell hard.  (And I should add that he's 6'6" so it's a LONG fall for him!)  He said that the Starburst flew everywhere, and that the people around him started scrambling to pick up the Starburst to hand to him.  He said he was humiliated!
 

This next story is probably my favorite of all of them.  And once again, it was while we were in college.  We had won a dinner with an older couple at a church activity we had attended.  (Weird prize, I know.  And I can't say either of us were real excited to go.)  A couple days later Jared told me that the lady had called and asked if there was anything either of us couldn't eat, and he panicked and told her that I was allergic to seafood, because he HATES seafood.  I didn't think much of it, because usually when you tell someone not to make seafood, they drop the issue altogether and make something completely different.  But the lady called me a few days later, and told me she was aware that I was allergic to seafood, but she wondered about fish.  I was trying not to make her feel bad, so I told her fish was fine.  Jared overheard me and started waving his arms and whispering "No!  Not fish!!!  Tell her no!"  So I said that some fish was fine, but others upset my stomach.  So she asked, "What about salmon?"  I told her salmon was fine.  I actually hate salmon, but again, I didn't want her to feel bad.  When I got off the phone, Jared was furious that I had agreed to salmon.  I told him he was just going to have to choke it down.  So we were both DREADING the dinner party.  When we showed up, they had us come to the table, and for the appetizer she had prepared SHRIMP CHOWDER!!!  And because I was "allergic" to it, I didn't have to eat it.  That was probably the hardest I've ever had to hold in my laughter, watching Jared choke down not only his salmon, but his shrimp chowder!  When we got home I called my sister to tell her what had happened, and I was laughing so hard I couldn't get the story out!

 

Every year my family goes to Bear Lake for a few days for a Family Reunion.  The guys usually go golfing so much that it starts to make all the wives mad.  The year that my sister got divorced, the guys half-jokingly had a "moment of silence" on the golf course for her ex-husband.  When they were done golfing, my brothers were trying to extend it another 9 holes and Jared told them that if he golfed another 9 holes, they would be having a "moment of silence" for him the following year!

Golfing at Bear Lake 2009

 

This next story is one that I had to get the "okay" to tell.  But again, it was so funny that I was crying laughing when he told me.  Jared's chemo would make him really constipated.  So he would sometimes go a few days and get really "plugged up."  A few months ago, he had gotten off of his chemo, and he was working when his body was ready to "unplug."  So he went into the bathroom, and his favorite, big stall was taken, so he wanted to wait for it to be open.  But when he got back to his desk, he realized he didn't have much time, so he rushed back to the bathroom and had to use the smaller stall.  He told me that basically five days worth came out at once, and it didn't smell great!  A couple of his co-workers opened the bathroom door and both yelled in disgust at the same time and immediately shut the door.  He said he heard one of them say, "Something VERY UNPLEASANT just happened in there!!"  He was paranoid the rest of the day that the smell was lingering on him.

It's Official!

Not only is it official, but he's started!  Jared had another MRI on Wed, and we met with the doctor right after.  He said that after the appointment he would fax all the info to Texas to get the final okay to be a part of the trial.  At that point they were pretty sure that he would qualify to be part of the trial, but because it's only in Phase II, they have to have a control group (the group that gets the standard treatment) and a test group (the group that gets the new drug) to be able to compare the results.  On Wed we were told that the first 20 people on the trial were given a 50/50 chance of getting the new drug, and after that it would be a randomized selection.  Jared was number 24.  So we were worried he wouldn't be selected to get the new drug.  Well, we received word yesterday that he did!  And he started treatment today!!

To explain the trial a little better, it's being conducted by MD Anderson Cancer Center in Texas, and there are only four locations in the U.S. that are doing it.  And Jared's doctor is the one overseeing it at Huntsman.  So we feel very fortunate that it basically fell in our laps!  The treatment is this:  Avastin plus the new drug Vorinistat.  Avastin is a drug that is commonly used in Glioblastoma.  They don't use it until after they've already tried chemo/radiation because it's a "short-term fix." It constricts blood vessels, preventing or slowing tumor growth, but it doesn't do much to control the active tumor cells, so those eventually take over.  But with the trial, they are adding vorinistat, a drug that has proven to control cancer cell activity in other cancers.  So in theory, the two together could be effective.  We knew we had a MUCH better chance at longer survival with the new trial.  So he goes to get Avastin through an IV every 14 days, and the days he gets the infusion he starts taking Vorinistat pills for 6 days.

As a side note, my mom has a friend who was diagnosed with a terminal cancer, in fact hers was spreading so rapidly that doctors only gave her 3 months to live.  She did a clinical trial, was one of two in the whole group that responded to the trial, and she's still around 10 yrs later.  So whether this is a "cure" or not, we just need him to be the ONE that responds!!

The P.A. asked us the other day at the appointment how our kids are doing, and if we've discussed the "situation" with them.  The truth is, we don't see the point right now.  The older two know that the cancer is back.  But I don't think they need to know more than that right now.  If Jared doesn't respond to the new treatment, THEN we'll probably sit down and discuss the situation with them.  Jace has been acting up lately, and I wonder if he's stressed.

Now to try to summarize the past month, Jared has been doing okay, not great.  His speech is a little better, but still really frustrating.  It's been a hard month because we know the swelling in his brain is still horrible, and that it won't get better until the Avastin kicks in!  And we also knew we had to wait four weeks recovery time to start the Avastin!  Cosmetically, his head looks GREAT!  He doesn't have the big dip he had before and the scar is healing up the best this time.  But there are some new issues.  The one that worries me the most is that he keeps having these weird lapses where I can tell something is wrong and I'll ask him questions and he just looks at me with a glazed look, so I don't know if he's about to fall or black out or start seizing.  They only last a few seconds - the only way to describe it is that it seems like his brain just turns off.  He did actually black out for the first time about a week ago.  We're lucky that he didn't fall hard.  I heard the thump, but when I found him he was on the floor crouched over and didn't fall very hard.  He also gets really dizzy, especially when he stands up after sitting for a long time.  I keep telling him to take his time, that we can all wait as long as he needs, but he always gets impatient and starts walking, which usually results in a near-disaster.  So my stress level has risen dramatically.  I've been seriously considering going on Zoloft the past couple months to calm my anxiety, at least until things start to settle down.  I feel like an absolute stress-case!  We think the "brain turning off" episodes are little seizures.  He's been trying to get off topamax, of course, so that's probably part of the issue.  The doctor is going to put him on a different anti-seizure drug to see if he likes it better.  The doctor thinks it's probably due to swelling as well.  So we are excited to have the treatments starting!  Just one step closer to our lives becoming more normal...

 

Getting the Avastin infusion

 

Even miracles take a little time...

We met with Dr. Colman early this morning to discuss treatment options.  I went to the appointment a little nervous, because I was afraid he was going to put us back on the radiation and temodar (chemo) plan, and my thoughts are if it didn't work the first time, why do it again?

 

I was kind of relieved to hear a new plan, but one I think we're still going to have to think about and really feel good about before proceeding.  He suggested putting him on Avastin.  Avastin restricts the blood vessels, which will help control the swelling, but will also prevent tumor growth.  But he mentioned that the active cancer cells will not be controlled by Avastin, so they are doing a trial right now that is in Stage II (meaning they've figured out the right dose to give, but don't have enough information to give statistics or results) where they add another drug that has been used in other cancers, that they are hoping to control those active cancer cells.  They've already submitted Jared's paperwork for pre-approval, but we won't know for a little bit if he is officially approved or not.  The fact that he's on blood thinners may cause a problem. 

 

He did mention that radiation could be an option down the road if the Avastin isn't working.

 

We're not new to Avastin.  Jared's mom was on Avastin, and it didn't seem to do much for her, and I might be completely wrong, but Avastin seemed to be a last resort, short-term fix.  But the doctor seemed to think this could "buy" several months or longer. 

 

My thoughts are that we need to try anything and everything, because Jared just might be the ONE person that responds to a certain treatment that others didn't respond to.  Like I said before, the only option I wasn't thrilled about was going back to chemo/radiation, because it didn't work.  We've got to try something new.

 

I think we're both pretty comfortable with this plan.  He will go in 3 times/month, 2 of them will be IV infusions of the Avastin.  But Colman said they wouldn't start that until 4 weeks after his surgery.  So I have time to explore other options.  I did explore a couple months ago, and there didn't seem to be much, but something new may have come up.

 

When we got home, it was still pretty early and I was REALLY tired, (Averie for some reason has been getting up 3-4 times every night!  I'm starting to consider the Benadryl option so I don't lose my mind!!!), so I tried to put on something for the kids to watch so I could attempt a short nap.  Cinderella was on TV, and it seemed to hold their attention, so I gave it a try.

 

I think I slept about 30 seconds before Averie woke me up, so I was trying to get back to sleep, and for some reason I heard what was being said on the movie (probably the only 30 seconds I actually paid attention to the entire time):

 

Cinderella (crying to herself):  "I can't believe. Not anymore. There's nothing left to believe in... NOTHING!"  Then Fairy Godmother appears:  "Nothing, my dear?  Now you don't really mean that!"  And Cinderella responds, "Oh, but I do!"  And Fairy Godmother says, "If you'd lost all your faith, I couldn't be here!  Dry those tears...  But we have to hurry, because even MIRACLES take a little time."

I've always believed that Jared's mom couldn't be too far away in all of this.  I know she's probably his biggest support and cheerleader right now.  But I've had some experiences just recently that have made me think that my grandma (my dad's mom) is also very aware of our situation, and that she, too, is close by.  And both of these women had exceptional faith.  I can even picture my grandma putting her arm around me and saying the exact words to me that Fairy Godmother used.

 

I don't believe this dumb little experience today was just a dumb experience.  I think it was another confirmation to me that we are not alone in all of this.  We probably have even more than two "Fairy Godmothers" helping us along.  But even more important, I DO believe that "even miracles take a little time!"

Pathology Report

Today was actually going quite well until the doctor came in the room and ruined it.  I should've guessed he had bad news because he seemed pretty serious.  The pathology report came back and indicated that there was some cancer in the sample that was removed.  He said that of the tissue they removed from the brain, about 70% was dead tissue from radiation, and 30% was cancer tissue.  So that explains why the first little sample indicated that it was just dead tissue.  They must've tested the wrong area during surgery.  I don't really understand the 70/30 thing, either, because his tumor was originally encapsulated, and back in January it looked more like a solid mass.  Does this mean it's no longer solid, and it's spreading like wild fire?  I guess that would've been a good question to ask, but I don't know if I want to know the answer.

 

For some reason the bad news was easier to swallow the second time around (versus hearing the same thing two weeks ago).  I don't know if I'm just still in denial, if it just hasn't processed yet, or if I'm just DONE with the bad news.  Probably all of the above.  But it's weird how your day can start off one way, and end so differently.

 

We meet with the oncologist on Tues to discuss our options.  I think chemo is probably a "for sure," and radiation might possibly be an option.  I'm just sick of doing all of this stuff that isn't working, especially when they make him feel horrible and don't seem to work.  But I don't know that we have any other options.  The neurosurgeon did mention some trial stuff.  I guess we'll see what they have to say on Tuesday.  No reason to speculate before then.

 

On the brighter side, Jared was able to come home today, a short TWO days after brain surgery!  He still has some motor skill issues, as well as the speech issues, but I'm not going to push much this soon after surgery.  I did get some exercises from the specialists to practice with him in a couple days.  For his motor skills he gets to play with putty and screw bolts on screws, things like that.  He tried the putty today and said it was way too hard.  So we'll try again in a couple days.  I do remember this is a SLOW process, unfortunately!  As much as we want it back today, it's just not going to happen.

 

Jared and I have always felt at peace that he has at least a few good years ahead of him.  I don't really know how to explain or even to accept all of this going so horribly so quickly.  I've heard of other situations where the cancer kept coming back and coming back, and the person still somehow overcame it.  I don't know how those scenarios equate with this type of brain cancer.  I don't know that it's even possible, because the brain can only take so much surgery and so much tampering.  Yet for some crazy reason, we both still have hope.  It's scary to be in a position of feeling like one day I will either be made a complete fool for having so much hope, or feeling like I will have an incredible story to share!  I would so much prefer to have a boring life with no drama and no story to share.

Surgery #4

Surgery was scheduled for 7:30am on April 30th (yesterday).  We had to be to the hospital at 5:45, so we had to leave the house at about 5:00am.  Neither one of us slept well the night before, and both of us remembered having really weird dreams.  It seems like that always happens when you're anxious.  Jared was starting to get really nervous the day before surgery, I've actually been unbelievably calm lately, even while he was in surgery. 

 

We got to ask a few more questions before surgery.  One of our definite concerns was the effect that this surgery would have on his right side.  The doctor sounded like he wasn't concerned at all about actual paralysis, but just weakening of his side that might require physical rehab.  Jared told me before surgery that if he woke up and heard the words "physical rehab," he just might cry!  We both mentioned that even walking through the rehab center would depress us.  That really was a horrible couple of weeks! 

 

They told me that the first hour or so of surgery would actually just be the "mapping" process.  They said sometimes it gets complicated and takes longer.  So I was watching the clock after they took him away to gauge when they were actually cutting.  I got an update about two hours later.  They said that he was officially under the microscope and that it would probably be another couple hours.  I got another update about an hour later saying that they were getting ready to close up, and that the doctor would be out to talk to me in about 45 minutes.

 

At about 11:45 the doctor finally came out to see me.  He said that everything went well, that the initial biopsy was indicating that it was just dead tissue, but that he wouldn't be able to confirm that for certain until he got the official pathology results back in a few days.  He told me that Jared still wasn't moving his right side, but he thought he was still too groggy from the anesthesia.  He also said that he had placed a piece of acrylic (he compared it to boat acrylic) in the top of his head to give a nice, smooth shape and to prevent the sags and bumps that he had prior to surgery.  He told me that he thought I would like Jared's "new head."  (I had joked with him before surgery that we wouldn't mind him working some of his plastic surgery magic if he felt inclined!)  That was actually good news as well.  Jared never talks about the shape of his head, but I know it bothered him.

 

I didn't get to see Jared until about 1:00pm when he was finally set up in the NCCU (neuro critical care unit).  One of the first things I asked him is if he could move his right side, and he could, so that was a big relief!  He was really tired the first little while.  He also complained about being in a lot of pain, but a cold pack seemed to help quite a bit.  Overall, things seemed to go pretty well.

Couple hours after surgery
Not looking too bad, actually!

If you notice the purple circles everywhere,
he had stickers placed there to help the
doctors "map" his brain to know where to cut.

I went home that evening to see the kids before they went to bed.  Brynlee had spent the afternoon making a poster for Jared.  She made sure to write "Jace put no thought into it.  No work by him!" 

I went up to the hospital again today.  They moved him out of critical care to the neuro acute care unit.  He has been walking around today, which is good.  His pain level is better today.  He didn't sleep much last night, so he tried all day to sleep, but his medicines keep him awake.  He is having problems with his fine motor skills on his right side.  He can't move individual fingers, and he can't point and flex his foot or move his toes.  That doesn't surprise me much.  Those were the last things to come back last time, so I would expect with a lot of swelling that he might have problems with those right now.  I think all of that will come back with work.  But it's a little scary thinking that prior to this surgery, he still wasn't 100% in those areas, in fact I would maybe say 60-70%.  So I'm hoping this surgery won't make those even worse.

 

The biggest concern right now is his speech.  The speech therapy lady calls it "word finding."  I knew he was having a little trouble yesterday, but figured he was groggy.  Today he's really getting frustrated.  He says he knows what he wants to say but it comes out wrong.  He can give simple answers to questions, but if you have him try to explain something, he can't do it.  He gets stuck on a word and gets really frustrated and gives up.  And I've also noticed that sometimes when he's frustrated he will keep repeating himself.  For example, the nurse had mentioned hearing something with his heart (something the nurse said was normal), and after the nurse left, I asked Jared what the nurse was talking about with hearing something in his heart, and he said, "I didn't hear anything.  I didn't hear anything.  I didn't hear anything.  He didn't hear anything."  (I think he was trying to say "he" the whole time, but couldn't get it out.  Even still, the way he answered my question didn't make much sense to me and I just dropped it because I could see he was frustrated.)  So he will probably require some speech therapy.  I don't know how much at this point.  I do remember him having issues with word finding from his first surgery, but this time seems quite a bit worse. 

 

I knew there was a reason I was dreading this dumb surgery.  I think we both remembered how bad the recovery was, but I must have forgotten all of these little things that seem to take forever to get back to an acceptable state.  And I don't say normal state, because none of these things have ever gone back to the way he was before all of this.  So now we're stuck with acceptable.  As long as he his personality and humor don't change, I will be able to deal with the rest of this. (Knock on wood!)