The Devil's Drug

One of the minor miracles is that Jared doesn't weigh 350 pounds!  And if it weren't for some of the other medications and antibiotics making him nauseous, he probably would be.  Jared was prescribed a steroid called dexamethasone to reduce the swelling in his brain.  Originally he was given 16mg every day (4mg 4 times a day).  Within a few weeks they started to taper his dose.  Steroids can cause all sorts of complications if given long-term, so they try to get you off as quickly as possible.

He was tapering his steroid when he started to feel "off" in November-December.  The radiation doctor just figured he was tapering too quickly and bumped his dose back up, which didn't help much (because it wasn't the cause of the problem).  But the infection created so much extra swelling in his brain, he had to be given a higher dose of steroids.

His weight and appearance started to fluctuate like crazy.  At times, his appetite was unbelievable!!!  I remember late at night he would have 4-5 bowls of cereal, a half a bag of chips, and still be looking for more food.  He would have all sorts of cravings.  I tried not to say much, but sometimes it was a LOT.  And he knew it, he just never felt satisfied.  I told him he now knows what the little fat kid feels like that says, "But I'm just so hungry, mom!"

The antibiotics made him feel horrible, so he didn't eat much for those couple months, and actually lost a lot of weight.  Then when he started to eat again, his face would puff and swell again (a side effect from the steroid).

By March, he started realizing that he really needed to get off the steroids.  He was already considered long-term at this point, but the tapering was making him miserable.  It's weird how a drug can have so much control over your body.  It was such a LONG tapering process.  He would only taper 1mg every week, but it would make a huge difference.  Sometimes he would lose movement in his toes or have limited movement on his right side, he got horrible headaches, he would lose coordination, he couldn't think clearly or focus, he couldn't hold (what he calls) an intelligent conversation (so he told me he rarely talked at work - it took too much effort), and he said his right leg felt like a 50 lb. tree trunk he was forced to haul around with him all day.

His brother got married in April, and he asked me if it was selfish of him to want to up his dose for a few days just so he didn't look so uncoordinated for the wedding and all the people he hadn't seen for a while.  That was when he named it the "devil's drug," because he said it was so hard to taper when he knew taking just that little tiny bit extra would make him feel like a million bucks. 

 

Jared's siblings at Neil's wedding

Whole family at Neil's wedding
April 2012

 


We were definitely starting to get concerned about his long-term use of steroids.  On the one hand, he was having side effects from taking the steroids - it made his legs really weak, his teeth were extremely sensitive, he was starting to show effects in his kidneys (steroids can cause kidney failure), his hip was really weak (some users have to get hip-replacement surgery), and they were limiting his ability to rehab.  Yet when he tapered, he felt horrible all the time, had horrible headaches, and was less coordinated, couldn't walk very well, and couldn't move as much so he couldn't rehab anyway.  He was getting really frustrated and didn't know what to do.  I finally told him he needed to just make a tapering chart, and just stick to the chart regardless, and that all we could do was to pray like crazy that his body would be able to compensate for what it wasn't getting.  By May, we knew from an MRI that it was no longer brain swelling causing tapering problems he was having, it was his body's dependency on the drug.

July 2012
Jared hanging out with my family

July 2012
With my neice, McKyla

Finally in July, after nine months on the "devil's drug,"  he took his last pill!  It was such a hard process to watch.  He felt horrible pretty much every day, because the second he felt better he was scheduled to taper again.  I was extremely proud of him for his dedication and determination to get off.  I can testify that it was NOT easy.

At this point his only concern from the steroid is that his hip is still really weak, so there is a possibility of hip-replacement surgery in the future.  We'll keep our fingers crossed!

Back to Work (Again)!

Jared had planned to return to work part-time on February 6th, two days after the baptism.  The seizures added the complication that he couldn't drive for another 3 months. Luckily, at least for the first week, he worked just a few miles from home, so I could take him and pick him up.

It was definitly weird dropping him off.  I felt like a mom dropping off my Kindergartener for the first day of school.  I was worried about how he would tolerate being back to work.  To make matters worse, he was working at a bank in the State Prison, so to get past the gate I had to have ID, which I didn't bring (because it was so close to the house).  So they made him walk the distance from the gate to the bank with his heavy backpack!  And he wasn't very stable, even without the heavy backpack throwing off his balance!  I tried to explain to the guard, but he didn't budge.  Jared had to walk.

Being back at work made an enormous difference!  There was a huge change in his demeanor, even the first day.  He felt like he was finally contributing again.  I actually missed his company, but I was SO HAPPY for him to be able to get out of the house! 

The few hours of work every day definitely wore him out.  He was still getting light-headed and dizzy.  He was also on strong oral antibiotics for four weeks (another precautionary measure for the infection) that made him nauseated and gave food a weird taste, so he didn't eat much.  This was again something we just decided to re-evaluate every week to see how much work he could handle.

Week two was in the office downtown.  It was a little harder to take him and pick him up.  On Wednesday of that week, I had dropped him off, and about two hours later he called and told me I needed to come get him right away because he'd had another seizure.  This one was pretty long, he again didn't pass out, but was more humiliated than anything.  I arranged for someone to get the older kids from school and I went and picked him up.

I started getting overwhelmed at the thought of taking and picking him up every day, so I was so grateful when I had help!  When he was working part-time I had to do a little more because someone could usually take him or bring him home, but I usually had to do the other trip.  When I look back at the months he couldn't drive, I really didn't have to do all that much considering the length of time he was unable to drive because of all the help.  His brother, Neil, took him when he could (this required Neil to wake up extra early to swing clear out of his way to pick Jared up and drop him off at work way out of his way, and also made his nights later - a big sacrifice for someone recently engaged!)  Other times if he worked in Provo or American Fork, a co-worker from Salt Lake would stop and pick him up.  For those acts of service, I will ALWAYS be gratful, because the days that I did have to drive were exhausting and difficult.

Jared started to work full-time again in March, and has ever since that time. 

Brynlee's Big Day!

Things were improving... slowly, but at least improving.  We decided to have a physical therapist come to the house a couple times a week.  It was really good to have someone come and actually show him what to do to engage a muscle group, or at least give assignments for him to work on.  His physical rehab at this point had been set back dramatically!  After three weeks with little movement, he was really tight.  He also had something to focus on, and it made him happy to start feeling productive, but to also see some improvement.

 

The girl that came to work with him was about his age and had little kids like we do.  One day as she was leaving, I was in the other room, but I could hear Drew (the two-year-old) yelling "Bye Grandma!  Bye Grandma!"  I was glad I didn't have to deal with the embarrassment of trying to explain that one!  Jared said he tried to ignore it, but she could clearly hear him, so he basically just said they have the same hair-do!

 

Brynlee's baptism day was quickly approaching, and we didn't know whether it was going to get pushed back or not.  She was so excited that we didn't want to if we didn't have to.  To give a quick explanation, in our church, we don't get baptized until we're 8-years-old.  We feel this is an age of accountability, where a person now knows between right and wrong, and can make the decision for themself whether or not to be baptized.

 

We also believe that the baptism has to be given by someone with the proper authority, or the Priesthood.  Jared holds the Priesthood, so Brynlee was so excited for her big day where she could get baptized by her dad!  The baptism was scheduled for the 4th of February, but Jared still had his PICC line, and the doctor kept delaying the removal "just to be safe."  So we were thrilled to find out a few days before the baptism date that the PICC line would be removed, and that he would be ready to baptize her!

 

It was a crazy day.  Jace had a basketball game early that morning, and we had to prepare for the big day and having family and friends over.  Jared took Jace to his game so I could prepare for everything else.  Brynlee's baptism went well, and afterward we had a big group over to our house.  By mid-afternoon, many people had left, but most of my family was still there to socialize.  Jared started complaining that he was having a seizure.  I thought he was joking at first.  Luckily my sister is a nurse, so she knew what to do much more than I did!  He didn't ever pass out, but his right side was violently shaking.  After about a minute, it went away, but then a few minutes later, he had another one.

 

We had a nurse coming to the house once a week to take his labs (this was to monitor whether the infection was going away or not).  All of his labs had come back okay a couple days earlier, but he hadn't had a very recent MRI, so we didn't know if this was possibly infection returning, or worse...  We decided he needed to go to the ER, especially having two in a row.  I was glad to have family over - it made the job of lining up a babysitter much easier!  We made the drive back to University Hospital (it was a long drive, but they had all of his medical history and information).  They took some more labs and all of them came back okay.  They didn't want to do another MRI because they didn't want to "over-radiate" if not absolutely necessary.  So after a few hours in the ER, we came back home with few answers.

 

I think Brynlee was disappointed and felt like her day was ruined, but she was concerned.  And Jared felt horrible because he had ruined her big day!  He was worried that the kids were going to start to resent him. 

 

This particular incident made it very real to me that our lives, at any given moment, could be turned upside-down.  But we were very grateful that the labs looked okay.

Infection Aftermath



He called the antibiotics his baby bottle.  He had
to wear this blue purse pouch (the strap shown) to
hold the bottle so it didn't dangle out of his arm.

Jared received a PICC line to receive his antibiotics for the staph infection.  A PICC line is an IV that goes through the vein in your arm all the way up to your arterial line.  He had a little bottle of antibiotic medication hooked up to that IV 24 hours a day for 9 weeks.  The only time he could unplug it was to shower.  When he showered, we had to wrap up his arm really tight with saran wrap and tape to keep it from getting wet.  Getting it wet could cause the area to get infected.  We had to be really careful with that IV because any contamination would go straight into his blood system.  The bottles of antibiotics had to be changed out once a day, and his IV had to be flushed with saline and heparin (to keep it from getting clogged).  And you'll never guess who got the job of doing all of this!  I felt like a pro by this point managing his meds, but this was something I hated doing!  I was worried I wouldn't clip the IVs off tight, that something dirty would touch the end, that I would flush it out to fast or slow, you name it!  There's a reason I didn't go into the medical profession like both my sisters!  I can't handle this stuff!  But I figured if they were trusting me to do it right, it couldn't be too bad.

The infection did a number on Jared.  When I say it did a number, that is a GROSS UNDERSTATEMENT!  He was so determined to get back to work right away.  Because he had had a seizure the night of the 8th of December, he was now unable to drive himself.  About 10 days after his second surgery, I dropped him off at work after his treatment.  I think we were all keeping our fingers crossed.  His brother, Brian, called from Oregon to see if he was holding up okay at work.  About an hour later I received a call from him that he was on his way home.  He had called his other brother, Neil, to come pick him up. 

We decided that he needed to take it easy and just re-assess the situation week by week.  The holiday season was definitely a blur.  We focused on finishing up the radiation treatments and getting him over the infection.

January was a month we'd also like to forget.  Jared felt absolutely horrible from the antibiotics.  We continued to drive up to Huntman Cancer Institute every day to finish up his treatments.  But there is one day in particular that I will never forget.  Jared had an appointment with his Infectious Disease doctor.  It was up at University Hospital early in the morning.  We got the older kids off to school and drove up for the appointment.  The infection had set his rehab back quite a bit, so we valeted the car, got the two little kids out (at this point Drew was 2 and Averie was 8 months), I put Averie in the stroller, and Jared had to be pushed in a wheelchair.  But I couldn't push both the stroller and the wheelchair!  I will never forget pushing Jared while my two-year-old pushed the stroller that he couldn't see over!  I think it took us 20 minutes to walk the short distance to the office.  It was a disaster!!!

One of the reasons for the wheelchair was that Jared had started to have extreme pain in his right leg.  He bruised so easily from his blood thinners that he thought he had a deep thigh bruise.  But the pain was getting so bad that he could no longer walk on it.  One day while he was at his radiation appointment, he decided to have an ultrasound on his leg to make sure it wasn't anything else.  They found that he had a solid blood clot from his groin to his ankle.  I didn't even know that was possible!  He spent three solid weeks on his back because it was too painful to walk.  They had even given him morphine at the clinic and it didn't touch the pain.  He finally figured out that when he walked, it was pinching his sciatic nerve.  The pain was so bad that he didn't drink anything because he didn't want to have to go to the bathroom.  So when I say he spent three weeks on his back, I'm not exaggerating!

The three weeks on his back definitely took a toll on Jared emotionally.  I could tell he was starting to get depressed, and there were a couple days where he broke down.  In our ten years of marriage, I've never seen him break down.  Once the treatments finished, he didn't leave the house much, and he felt like he was missing out on everything.  One night in particular I came home from a "Meet the Jazz player" night with Jace for Junior Jazz.  This was something that Jared had always done with him.  I got home and he was so frustrated that he was missing out on everything.  And he wasn't working at all, he felt horrible, and he just felt really useless.  There was another incident where I was exhausted and Jared said he had to get out of the house right away.  He didn't care what we did, he just needed to get out.  So we basically went and drove around for a couple hours.

January seemed to be my rough month as well.  I was mentally and physically exhausted, Averie was STILL waking up at night, so I wasn't sleeping well at night, and I remember feeling like I was on the verge of a nervous breakdown.  There were days where I was literally findng it hard to catch my breath.  And I tried not to think about much because I knew it would push me over the edge.

The I.M. doctor sent us to get Jared's
arterial flow in his leg checked.  These are
the cute little numbers they had him wear.

Because of the new setback, we decided that we needed to have ONE doctor overseeing all of his care.  At this point we had so many doctors and all the information just seemed like a big mess!  So we found an Internal Medicine Doctor in Draper to oversee his care.  At his first appointment, the doctor told us that originally he didn't want to take Jared as a patient.  He said he had gone through an enormous book of information the night before to catch up to speed on Jared's current status!  He said he really didn't want to deal with all of it, but then he realized that Jared was probably just a normal guy like himself that just got dealt a bad card!

Poor Bill!

I need to inject somewhere a little about Jared's dad, Bill. 

Bill lost his wife to Glioblastoma in October, 2008.  So you can only imagine how he felt to receive the news that his son had now been diagnosed with the same cancer.  And to add to the helplessness, he was serving a mission with his new wife, Margie, in Hawaii.  When he called me from Hawaii the night we found out about Jared, I had to try to keep it together.  I was absolutely devastated for him!  He had received permission to come home for 10 days to be with Jared.  He spent those days with him while he was still in the hospital.  I think Bill had a hard time returning to Hawaii.  The uncertainties of cancer made him want to stay home and care for Jared.  But we really needed him to serve.

Bill and Margie had left on their mission four months prior to Jared's diagnosis.  When missionaries are set apart, they receive a blessing.  For some reason I paid attention to the words that were said to him, and one part in particular stood out to me.  He was told that through his service, his family would see miracles.  I remember thinking that miracles was such a big word.  He wasn't told they would be blessed, he was told they would see miracles.  So we needed him to continue to serve.  And his family has seen miracles.  And we feel and desperately hope that Jared is another one of them.

Blessing in Disguise?

We certainly weren't happy about the infection in his brain.  To get staph infection in the SAME location as prior surgery is a pretty good indication that it was caught or given during the prior surgery.

But I couldn't kick the overwhelming impression I kept getting that day.  This is a blessing in disguise, this is the Lord's will, and it's something you need to be grateful for.  For some reason I kept thinking of the book "The Hiding Place."  I've actually never read the book, but I had heard about a part in the book where the flees were so thick in one of the concentration camps that it made the living conditions unbearable.  One of the little girls in her prayers would thank God for the flees.  When someone got mad at her for thanking God for the cursed flees, she said that she had been taught that she needed to be grateful for EVERYTHING, and that would include the flees.  They found out later that the flees were so bad that they kept the officers from coming in and raping and beating them.  So the flees, were in fact, a blessing!  And that is the way I felt.  I knew at that point that I might never understand the reason, but that I needed to be grateful for this blasted infection.

I started getting answers sooner than I had expected.  About a week later, we had heard that a neurosurgeon (after hearing about Jared's infection), had said that infections can be beneficial for brain cancer, and that if they discovered an infection, they would actually let it sit for a couple days.

When I reflect on our situation, I think there's a reason why Jared didn't show any symptoms of infection.  It was to let that infection sit and do it's "job" for as long as possible without killing him!  He had certainly had it for more than a couple days!  He had it long enough that his head was about to burst!

But I didn't really understand the benefit until a few months later, when I read this passage in a book...  "Dr Jean Merrill, assoc. professor in residence in the Dept of Neurology at UCLA, found that Substance P, a neuropeptide secreted by the brain, can increase brain-cell production of tumor killers and immune cell activators. HOWEVER, THIS STIMULATION OCCURS ONLY IN CONJUNCTION WITH AN INFECTIOUS TRIGGERING AGENT."

So the infection was actually triggering tumor killers in his brain!  The Lord works in mysterious ways...

Something is Wrong!

The first time that Jared felt "off" was Thanksgiving Day.  He was a little dizzy, but just figured it was part of the recovery.  Right after the Thanksgiving holiday, Jared returned to work.  It was a big accomplishment that he was able to drive himself!  We had spent the couple weeks before practicing, since his reflexes were still slow, and his movement in his leg was still limited.  But he felt comfortable.  It was weird to have him gone, but he was really happy to get life back to "normal."  It was an adjustment.  Sitting up for long periods of time would make him really light-headed.  He would get home from work, get out of the car, and I would watch him hold to the side for a couple minutes to catch his bearings.  He had really started to get light-headed and dizzy.  But there was so much going on to cause this - the long days, the radiation treatments, and tapering from the steroids.  He had told his radiation oncologist about the dizziness, but he figured it was something minor.  After a week of work, things started to deteriorate quickly.  The first week of December, he went from walking quite well Sunday (the 4th), to needing a cane on Tuesday (6th), to being back in a wheelchair Thursday (8th).  I also noticed that his incision was starting to bulge a little.  And the dizziness was getting unbearable.  He had missed work the whole week. 



The "irritated stitch"

We met with the radiation oncologist, who once again, claimed that he had now been in radiation for three weeks, and that it was probably a side-effect of radiation.  I also pointed out the bulging incision.  He figured it was an irritated stitch.  But while we were at Huntsman, we realized we still hadn't met with the chemo oncologist yet, so they squeezed us in.  After TWO hours of waiting in the room (I finally had to go sit in the car with the two screaming little kids - we had been at the hospital over four hours by this point), the doctor came in and immediately saw that Jared wasn't doing well.  He said that it might be normal, but that we should have it checked out just to make sure.  He ordered an MRI for the following day.  We went home absolutely exhausted and starved.  I dropped everyone off at home and went to re-fill a presciption and get dinner.  I returned home 45 minutes later to a fire truck and ambulance outside my house.  Some neighbors were outside and informed me that Jared had had a seizure, and that Brynlee called 9-1-1.  I walked in to what felt like a million strangers in my home.  Jared was alert and told me what had happened.  We told the ambulance to take him up to Salt Lake (since that's where he had been receiving care and had his records), I arranged the kids' care, and headed up to the ER. 

They did another MRI, which showed another large mass, same size as before, same location.  The ER doctor said it was an infection.  I basically told him I had heard that before and asked if he was sure.  He seemed pretty sure.  We were once again told we needed to wait to see a specialist.  We knew it could take all night.  It was about 11pm by this point, Jared sent me home and assured me that he would call if he heard anything from the specialist.  Of course, I never received a call!

I obviously didn't sleep well that night, but at one point I woke up (it was probably 4 in the morning) and had an overwhelming impression - Don't worry, things may appear worse before they get better.  I was really nervous to call Jared the next morning.  Sure enough, the neurosurgeon had told him that because he hadn't shown any signs of an infection (fevers, vomiting, chills, etc), they were pretty sure it was tumor re-growth.  (To have tumor re-growth, this soon, during treatment, would be absolutely HORRIBLE.  That would mean we were looking at weeks, if not days.)  He had known this information all night (but didn't tell me!) and didn't sleep at all.  They wanted to wait another day for surgery because he was on blood-thinners.  That extra day wait was another LONG day.  They had done other tests that had indicated possible infection, so they weren't sure.  They had done another MRI in the evening that was supposed to be more conclusive.  We waited for the results.  My heart would jump everytime someone passed the room.  But the results never came.  Because of the impression I had, I was pretty confident it was an infection, but the specialists were telling us differently, so it was not a fun day.  By evening his head was bulging quite a bit.  We still hadn't heard anything, so at about 11pm I headed home.

Jared called at about 6am and told me he was prepping for surgery.  I didn't know if I would make it up there in time to see him before.  I got there and called the surgery area right as they were wheeling him off to surgery, so they let me just go and see him quick in the hall.  His head was about the explode!  I couldn't believe it!  They told me that they would call the waiting room from surgery once they knew more.

I got a call about an hour later.  It was an infection!!!  I never thought I would be so excited to hear that my husband had a brain infection, but it was SUCH a relief!!!  And it was a relief to know that there was, in fact, something wrong with him that was causing all of the setbacks.



Incision after second surgery
The scab on lower part is from them
sewing a drainage bag to his head.

Surgery was much shorter this time, and I was able to see him a couple hours later.  And he was more alert two hours after this surgery than he was two weeks after the first surgery!  I was also relieved that things went so quickly because Brynlee had a big dance recital that afternoon and I knew she really wanted me there.  So I left Jared for a few hours so I could head to the recital, then rushed back to the hospital.

They had antibiotics pumping through his IV until they got the culture back.  It was staph infection.  We didn't know how long to anticipate his stay at the hospital this time.  He had been in surgery on Saturday (the 10th of Dec.), and I remember telling him that I was going to send positive vibes his way to get him out by Tuesday.  That seemed like a LONG shot.  Realistically I thought it would be Thursday.  But the positive vibes worked, and they released him Tuesday!

Treatment Time!

We debated a little bit about which treatment option was the best, but everything seemed so rushed that we didn't have much time to really think about it.  He was to begin treatments three weeks after surgery, and he had gotten home from the rehab center just a couple days before the point of starting treatments.  From our research, we knew that radiation was pretty much a must.  The long-term survivors with his cancer had all received radiation.  We were more hesitant about chemo.  Chemo is a drug that works through the blood system, but the brain has a blood barrier that chemo can't penetrate.  There is a newer chemo drug that had been out about 7 years that was showing some effectiveness.  The only time we actually heard any sort of statistic was when his neuro oncologist told us that the chemo was improving the survival rate to 5 years from 2% to 10%.  So with chemo, he now has a 10% chance to make it 5 years.  I will discuss our thoughts on the statistics and his prognosis a little later.

For a few days before he was to begin treatment, we started looking heavily at clinical treatment options, but we felt rushed.  We felt like we needed to get going with SOMETHING or this tumor was going to start growing back.  I think it's a common feeling, but totally false.  Generally, the people who actually take their time and do research and contemplate treatments are the ones that are happier with their treatment and seem to do better.  We knew that by starting the chemo/radiation plan, we were limiting future options.  Many clinical trials won't accept somebody who has done chemo and radiation.  But we were happy with our choice.

Jared was scheduled for 33 radiation treatments, to be give Monday-Friday.  The "plan" was for him to start work again at the end of November, and because he works downtown in Salt Lake, he would just drive to his treatments during his lunch break.  That plan was very successful for about a week (because of reasons mentioned later).

With radiation, they fit his head with a tight mask and the treatments are very precise.  People receiving brain radiation 10-15 years ago suffered from horrible side effects - losing teeth, sterlization, etc. but because it is more precise now, they thought he would tolerate it quite well.

His chemo, temodar, is a pill he takes nightly for 5 days on a 28-day cycle.  They had him on a minimum dose during radiation, then bumped him to a full dose once he was finished with radiation.  He usually has 1-2 bad days a month from chemo, usually starting a couple days after he finishes his 5 days.  His blood count levels are the lowest on day 21, making him more susceptible to illness.  Overall, chemo hasn't been too bad, and we really can't complain!  It definitely beats the IV drip!!  He will be on chemo for a year, if everything goes well.  He is looking forward to being off of it in January!!

Finally Home!

Jared finally got released to come home on November 1st.  His stay at the rehab center was quicker than they had expected.  I was so glad to have him home.  The daily travels were getting exhausting!  But I definitely felt incapable of his care.  The nurse started giving me all of the information about his medications, and I was about to have a nervous breakdown!  He was on so many medications - some were 4 times a day, some 3 times a day, some only twice, and some were only once a day.  I had to wake up in the middle of the night for some of them, some were to be taken with food, some without.  He also had two shots in his stomach every day.  It was a bit overwhelming!  I put all of them in a container and colored the tops of the lids with different colors, then made a chart for the times of day, and everything was color-coded.  Within a few days, I felt like an expert!

Jared came home walking with a cane.  This was two weeks after the jerk had told him he'd never walk again.  We were worried about the noise level with the kids, but he did okay.  We just had to try to keep things as mellow as possible.

We learned quickly the downfalls to him being unstable.  A few days after he came home he rolled over and just lost his balance and fell off the bed, smacking the side of his head on the end table.  He split his ear open and had to go get stitches.  I had to drop him off, go pick up the kids from school and take Brynlee to dance, go pick up Jared from the doctor's, then go back and get Brynlee.  When I dropped off Jared, he told how humiliated he was to hobble into the Instacare with a split ear!

But overall, his recovery was going quite well.  I was amazed how quickly he was getting his strength back.  He had started to lifts small weights and biked on an exercise bike every day, and was seeing daily improvement.

The Surprises of Surgery!

Jared was completely out of it when he came out of surgery, but not too out of it to start demanding the Oregon game be turned on.  The first night was horrible, and I actually couldn't wait to leave because it was scaring me.  He was really uncomfortable and wanted to lay back, but he had to sit up because he was really nauseous and kept dry-heaving.  It wasn't the funnest thing to watch.  We had told him that the tumor was encapsulated, but didn't know how much information he was actually retaining.  I knew I had to get home to the kids.  I didn't know how much they knew or understood, but Brynlee had called me crying so I knew they needed me home.



This is basically how he was the whole
first week - tired and out of it.

I went to the hospital first thing Sunday.  That was when reality hit us.  Jared had no movement at all on his right side.  Luckily it didn't affect his face or speech, but he couldn't even squeeze my hand.  Going into surgery, we were NOT prepared for this.  They didn't know how much he would get back.  His doctor said he had good "tone" (whatever that means), and that he was confident he'd get his movement back.  He told us that the swelling was going to be really bad for at least 3 days, and that it would be frustrating, but we couldn't expect much until the swelling went down.  Jared had to be given Zanac to calm him down.  He said he felt chlosterphobic from not being able to move.  (We've actually heard this is common.)  When I got home Sunday night, my parents had to go home to get some things (they had come so suddenly they hadn't had a chance to pack).  When they left I had my first breakdown.  Everything just hit me and I was so overwhelmed!



Recovering in ICU

By the second day Jared could squeeze my hand.  He made really slow progress every day.  The third day, I had decided to stay during the "no visiting" hours because I had planned to leave shortly after.  I think it was from 6-7pm.  And I was glad I did!  A doctor from the physical therapy rehab came to assess him for their clinic.  The doctor had him do a few different things, then told him it wasn't looking too good that he would ever walk again.  He said that most of the time patients have more movement in their legs than their arms, and he had more in his arms than legs.  He was definitely very negative and doubtful.  And the more he talked, the more I was fuming inside.  I could see the look of panic on Jared's face.  After he left I told Jared how mad I was and told him not to listen to the jerk.  Jared was definitely panicked by what he had said.  I was determined not to let that guy have ANYTHING to do with his recovery.  So we chose another facility.  But I was glad to have been there for that conversation.  I can't imagine what would've happened if I'd missed it!

Picture taken a couple days after surgery.  It
actually looked really good and healed nicely.
After a few weeks it wasn't very noticeable.

Jared spent a week in the ICU because they didn't have other beds available.  This was bad because kids aren't allowed at all inthe ICU.  We finally got him into a different room Thursday night, and I was able to bring Averie to see him.  It was a weird reunion.  Jared was just SO out of it for the first week or two. 

The next morning he was "shipped" from Provo to the rehab center at University Hospital.  We were told he would have another 2-3 weeks there.  I was glad to have a change of scenery, but this place was depressing!  They were so full that he was given a room that had two beds, meaning he would possibly have to share.  And besides Jared and one other high school kid, the patients were all 70+!  So we laughed at the thought of who he might have to share with.  Luckily it never reached that point.

I was also finally able to take the kids to see him.  They were so excited to see him!  But the visits didn't go so well.  We were warned that he wouldn't deal very well with noise.  Even getting a text on his phone would shoot his nerves up.  So we had to limit the time with the kids.  We decided that the best thing to do would be to bring one kid each night to have their "special time" with dad.  They loved the idea and looked forward to their turn.  Jared was in intensive rehab most of the day and didn't get done until about 5:00, so I was able to spend more time home with the kids.  I would go up nightly after rehab was over with the special kid for the day.  They got to push dad in the wheel chair and thought it was fun.  We would usually push him to the cafeteria to get him out of the room. 

As I said before, the rehab facility was pretty depressing.  Jared was coming down the hall one day and heard a lady yelling, "Am I gonna die?  Am I gonna die?"  He heard the nurse reply, "No maam, you're going home tomorrow."

Jared was SO frustrated with rehab.  He actually made really quick progress, but for him it was frustrating.  They kept assuring him that he was doing great!  And he was excited to show us the progress he had made for the day.  Usually it was something little, like being able to lift his arm straight up rather than just curl it.  The one thing that he was getting really frustrated with is that he didn't have movement in his toes.  His brother, Neil, would spend time every night working with his toes, pointing and flexing them, and trying to stretch out his foot.  After about a week in rehab, he started getting a little movement in his toes.

The boys playing cards at the rehab center.

 

He also learned to be grateful for his progress.  There was a high school boy at the rehab center that had been paralyzed from the neck down from a bad hit during a football game.  That kid wasn't making much progress.

During his stay in rehab he had an invitation to get out of the rehab facility for one night to go to the Utes Football game, and he turned it down!  He said he had too much pride than to show up to the game in a wheelchair!

We tried to get permission for him to come home the night of Halloween, but they didn't allow it.  So we took the kids up to Salt Lake in costumes right after school so he had a chance to see them for a few minutes before they went trick-or-treating.  Jace was a BYU football player for Halloween, and as you can imagine, it didn't go over very well in the University of Utah Hospital!  He had a few comments.  This was one of the little faces that cheered him up that day!

The Diagnosis

You always hear people say that their lives couldn't have been more "normal" before getting diagnosed with cancer.  And that would certainly describe our case.  Jared was extremely active, which is why he realized something was wrong.  It all happened very quickly.  On Thursday, October 13th, he spent the evening at the gym lifting weights and playing basketball.  He noticed that one side of his body seemed stronger than the other, but didn't think much of it.  While playing basketball, he said he couldn't keep his balance.  He said as he would shoot he would just lose the ball, and if he jumped to block a shot, he would lose his balance and fall back against the wall.  The way he describes it, I'm sure the others thought he was drunk!  On Friday, October 14th, Jared played golf for a work tournament, and I went to lunch with some friends.  He said he played the worst round of golf in his life, to the point that it really embarrassed him.  He said he couldn't quite hit the ball square on.  That afternoon we went to the park down the street with the kids.  It was a beautiful day and many neighbors were there.  Jared played football with Jace and some neighbors.  When we went home to make dinner, he told me that at the park his body was acting weird, and that his foot kept lagging behind, like he was losing movement or feeling in his leg.  He also told me of the other occurrences he'd had previous, and I insisted he go to the ER.  I thought he was having signs of a stroke, because it was all in his right side.  He had been hospitalized a few months prior for pulmonary embolisms (at the time we thought it was a freak thing, now we obviously think it was cancer-related), and he had just gotten off of blood thinners, so it made sense to me that it would be something related to that.  I certainly didn't expect what we were to find out! 

He went to the E.R. and they took an MRI. They saw a large mass in his brain. The ER doctor told him the mass was a cancer called Astrocytoma and told him he needed to go to another hospital that had specialists. He called and told me the news. For some reason the word cancer didn't scare me. I was unbelievably calm that night. I picked him up from one hospital and took him to the other. We had to wait until morning to meet with the specialist.

Saturday morning the neurosurgeon came to meet with us. Jared had told him that his mother had passed away a couple years earlier from Glioblastoma, and that he wanted to eliminate that possibility as quickly as possible. The doctor went to study the MRI, and returned with his findings. He said that the mass was either a large infection that would need to be drained through surgery, or unfortunately, because of the location, it was Glioblastoma. That was the moment we both panicked.  We had just been through this whole thing with his mom, so we knew exactly what Glioblastoma was. In fact, we had known of five people with Glioblastoma, and none of them had made it even two years.  Jared wanted to get the surgery over as quickly as possible to know for sure what it was.

He had another MRI, this time with little markers on his head so that the doctor had some reference points during surgery. We had decided before-hand that if it was, in fact, Glioblastoma, that we would like the doctor to go ahead with the surgery to remove the tumor. The initial procedure was an exploratory surgery, and we were hoping that would be it. We called his brother, Neil, to come and give him a blessing prior to surgery.  At this point the doctor was pretty confident it was an infection because of how quickly the symptoms had come on.  The blessing didn't give me the assurance I was looking for, and in fact, it did quite the opposite.  The blessing was definitely indicating that this was something bigger than an infection.  I think I knew at that point it was cancer.  At the end of the blessing, there were promises made, promises that seemed impossible.  Surgery began at about 11:30am.

After I left him, we quickly had a large group of family members at the hospital, eagerly waiting to hear what the doctor had found. At about 2:30pm the doctor came out and told us that he had tried to drain the mass, but nothing was coming out. So he removed some samples. He had taken four samples. Two of them appeared to be active tissue, and the other two were dead tissue, or necrosis, giving him a pretty clear indication that this was, in fact, a very aggressive cancer. We were devastated! We decided to go in a room and say a prayer before telling the doctor to go ahead with the much more invasive surgery to remove the tumor. The doctor told me that he had no idea how long the remaining surgery would take. He said he would take as long as he needed.

The next few hours were the darkest hours of my life. I thought of my kids, I thought of Jared having to hear the devastating news, I thought about what the future could hold. I was scared.  And I certainly doubted the promises in the blessing.

The doctor returned earlier than I had expected. He had finished surgery by about 7:30pm. His demeanor had changed. He told me that the surgery had gone well. He told me that when he went in, the tumor did not have the characteristics that he was expecting the see at all. The color and texture were different than he had expected, but even bigger - Glioblastoma has little spider legs, or root systems, that are impossible to get out. This tumor was encapsulated, or self-contained. He was confident that he had removed as close to the entire thing as possible. So he didn't really know what to tell me.  I think he was confused.  So we knew it was cancer, we just didn't know what kind. But I was elated!! I knew at that moment I had seen my first miracle, and I couldn't go back to the dark place I had been in moments before.

It took a LONG 12 days to finally get the actual diagnosis back.  They had sent the tumor to the in-house lab, but because there was some confusion, they sent it to Stanford to be tested.  We held up okay for about a week, but after that the wait was really starting to wear on everybody.  We just wanted to know what it was so we could start planning.  Jared had already met with the oncologists at Huntsman to try to plan treatment - because of the samples they were pretty confident it was Glioblastoma.  The doctor finally called me with the results on October 27th.  The diagnosis was, in fact, Glioblastoma Multiforme, but it was in a different classification called "Giant Cell."  Patients generally did better with giant cell, because it is encapsulated, making treatments more effective.  And it is really rare (which is why the doctor hadn't ever seen it). 

So we had our answer.  I think at that point we were all okay with it.  We knew it could've been worse, so we were just grateful for what we had.