Book Form (Part 2)

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!

The Importance of Support

Our story would most definitely be incomplete without mentioning the overwhelming support we've had. I could not have made it through this past year without help and support. We have been very blessed with good families, friends, neighbors, co-workers, extended families - I could go on an on.

We are fortunate to both have close families. They have been incredible! And I can't start mentioning particular things, or I'm sure to miss something, but I do have to mention that Jared's family all came to be with him those first weeks in the hospital. He had two siblings that flew in from Oregon, and his dad and his wife got permission to come home from their mission for a few days to help out and be with him. We got in trouble one night because of all the family members visiting him! The limit was 3 visitors, and we had 14 people cramped in the room! But nobody wanted to leave.

His family organized a schedule to help take him to treatments. I only had to take him once or occasionally twice a week, which lifted my load tremendously! They've cleaned my house, made meals, changed schedules to accomodate our needs, phone calls of concern and support, I could go on and on - I will always remember and appreciate everything they've done to help. This has been particularly hard on them to have their mom pass away from Glioblastoma, and to now have their brother with the same cancer. Their situation would make most people bitter, but I've never seen any bitterness from any of them. And I'm sure Jared's mom wishes she could be here. But knowing Linda, she wouldn't have ever left his side! And who knows - she probably doesn't!

My family has also been unbelievable. From their acts of love and support, I can see that their love for Jared is more of a love for a brother or son than an in-law. I do have to give particular mention to my mom. Bill was very hesitant to go back to Hawaii. My mom told him to go and serve his mission, and assured him that Jared would now be her mission. And he has been. Jared's sister, Julee, told me that she hopes to one day be the mom to her adult children that my mom has been for us. I think that sums it up.

There has been much prayer and fasting on our behalf, many from other faiths as well. Our neighborhood held an organized fast, and Jared had a big group from back home (Oregon) that held a fast. I, too, had high school friends that organized a fast on our behalf. My extended family organized a fast, and his family has fasted on many occasions. The power of prayer is undeniable. When I look back to those first few weeks, I'm amazed at how well I held up. It had to be the prayers. And we've certainly witnessed many miracles already.

We've both been amazed at the generosity and concern from others. There have been packages for the kids, cards, gift cards, yard work done, anonymous packages or money left on the doorstep, meals, flowers, visits, emails, the list goes on and on.

His co-workers have also made huge sacrifices. They've given rides to or from work and they've donated leave of absence.

I get very emotional writing or thinking about our support. I hope it is some indication of the gratitude I feel that can't possibly ever be fully expressed.

What's the Prognosis?

What's Jared's prognosis? Only God knows that. So we've never asked a doctor what he thinks the prognosis is, nor would we listen if he told us. Because if people defy odds, the doctor can't possibly give us an accurate guess. Each case is different. The statistics would show that Jared has a 10% chance to live five years. I don't think I would be any more or less scared if that number was 2% or 50%. We don't really care what happens in other cases, that doesn't make Jared's outcome any different. And the only outcome we are concerned about is his. And dwelling on numbers or statistics only hexes his ability to fight the disease.

We don't dig much to find stories of people with his cancer. We've already watched his mother go through it, so we've seen first-hand what can happen. Generally the tumor keeps growing back, and at some point surgery and treatments just aren't worth it anymore. Even the survival stories are depressing. One we've seen is a lady in Oregon who was diagnosed 12 years ago (she, too, had young kids at the time of diagnosis). The doctors told her she had less than a year to live. She's still going strong 12 years later, and says she's been enjoying watch her kids grow! But she has had to have tumor-removal surgery 4 times in those 12 years, and says that the effects from surgery have left her at this point with the brain of an 80-yr-old. But she seems to live a very active lifestyle. Her first re-growth didn't occur for four years.

Another was one I came across just a couple weeks ago. It was a guy with his exact cancer, GBM, and the tumor was encapsulated. He was given 6 months to live. This guy just celebrated 25 years since diagnosis, and he's never had any tumor re-growth! Yet he has suffered severe effects in his brain from radiation. (But keep in mind, this was 25 years ago. Radiation is much more precise now than it was back then.)

While these stories certainly give us hope, I guess we're selfish in our desire for more. We both feel confident he has many good years ahead of him. We both wish we knew what "many" is - is that five years? Or 50 years? As I said before, only God knows that.

Living Life in Two-Month Increments

Waiting to get the results of an MRI is something I wouldn't wish on my worst enemy! We actually do a pretty good job of just living our lives, but they certainly creep up fast!

He had his first MRI in mid-January. This was a "baseline" MRI. He had just finished up radiation treatments, so they took an MRI as a baseline to measure any changes or growth from that point. They were actually at that time watching to make sure the infection was clearing up as well. So that baseline MRI still showed quite a bit of swelling.

He had another MRI in February, which showed improvement (because of the infection and swelling), another one in March, again showing improvement, and at that point they bumped it back to every two months. The MRI in May showed that there was very little swelling, and both the MRIs in July and Sept didn't show any signs of tumor re-growth. So at this point, almost a year out, all clean MRIs!! (To contrast, his mom had her second tumor-removal surgery six months after her diagnosis.)

And this is basically the plan for the rest of his life - watch and wait. His oncologist told us he will have MRIs every two months for about two years, then if everything still looks good at that point, they will spread them further apart. We heard of a guy 10 years out that was getting his MRIs only once a year. That seems like such a dream!!!

He usually gets his MRI on a Monday night after work, then his appointment to review the results is the following morning. I don't think much about the MRIs until about a week before. And even then, I try not to stress out about them. But I know I'm stressed because I usually get a massive headache a day or two before. We both usually sleep okay the night before (which is actually quite surprising). Jared actually said he didn't sleep much the night before this last one. But the minutes leading up to the results are almost unbearable. We've always been pretty confident that they'd be good news, but the further out he gets, the scarier it gets. It's basically the thought that the news just might turn our lives upside-down again. I would try to describe the feeling by imagining the most nervous I've ever been in my life, then multiplying it by 100.

All of his MRIs at this point have shown some shrinkage in the hole in his brain. But I don't think they expect for it to shrink much more. He will always have a hole where the tumor was.

If he does have tumor re-growth at some point, that definitely isn't good news, but we will probably look into other treatment options. It would obviously mean that what we've done didn't work and isn't going to work, so we need to find something else that might work.

At his appointment back in July, we actually received more great news! He signed a consent form to have his tumor researched as part of a study. (We weren't even aware, but apparently his tumor is being frozen somewhere!) Only six clinics in the US are conducting this study, Hunstman Cancer Institute just happens to be one of the six, and his doctor just happens to be one of the ones doing the study! His doctor told us that these types of studies have lead to big advancements in breast cancer treatments. So he obviously didn't promise anything, but made us aware of the huge benefit this could be for him in the future, considering that if they did find something that was looking promising, it would be based off of studying HIS tumor! Well, I should probably clarify that they won't just be studying his tumor, I think he said 250 tumors will be studied. But this was such great news! I had always questioned our decision to go to Huntsman versus somewhere much closer to home, and now I see that this was just another one of our blessings in disguise!

 

Physical Rehabilitation

As frustrating and slow as the physical rehab process has been, it has actually been quite fascinating. I wish I could say that the process is over, but it's not. It's still very much a daily challenge .

As mentioned before, the day after surgery Jared couldn't as much as squeeze my hand. People would come in from the rehab unit of the hospital to work with him a couple times a day for a few minutes. But to be honest, they did most of the work. But we could see slight improvement every day. By the second day, he could squeeze my hand, but he couldn't release it. But we were so happy! At least it was something! The workers did a lot of stretching. They told us that stretching was very important so he wouldn't lose his range of motion. I wasn't very good at stretching him. He usually got mad that I was doing it wrong or that I wasn't strong enough to where he could feel it. So I started to leave that job to his siblings! (Even now it's a problem!)

The major progress didn't begin until he got to the rehab center a week after surgery. At the facility, he was now in full-time rehab. I was always excited to see the progress for the day! It was little minor things that were such break-throughs and kept him going. He clearly remembers sitting in his hospital bed and trying to move each individual finger. He would stare at his fingers and concentrate. Finally he was able to move his thumb, then his index finger, then eventually the other fingers came. He was so excited! That was about 9 days after surgery. Another breakthrough was about 11 days after surgery. He usually had to use his left arm to place his right arm on his lap. Again, he focused really hard and after a couple minutes, he was able to lift his right arm onto his lap without the help from the left arm.  He also did little occupational therapy exercises during the day. One he remembers is sitting at a table and they placed a tiny skateboard on the table. His job was to place his hand on the skateboard and move it outwards (working his range of motion to the side). He said it felt like it weighed 300 lbs. and he couldn't do it. He would get so frustrated!

One thing that I watched that was fascinating is how they would tell him to do an exercise like a calf-raise. One worker would help him stand while the other would continually tap his calf muscle to try to "wake up" the nerve or muscle. And many times it worked! They would also use an electric massager to try to stimulate a nerve or muscle.

He was always excited to show us the new things he had learned. Eventually he was able to get himself out of bed and into his wheelchair by himself. I think the ultimate goal at the rehab center was to get him walking before they would send him home.

I would dare say those first couple weeks were the most humbling, humiliating weeks of his life. He needed help with pretty much everything - from going to the bathroom to getting dressed.

When he got home he started making rapid progress. He came home with a cane (and actually a wheelchair, but never used it). Within a day or two he was walking up and down the stairs, very carefully. He started using an exercise bike and lifting weights and was also starting to get his strength back. He was making such rapid progress that I was just sure he'd be back to his old lifestyle within a few months!

The radiation treatments, infection, and blood clot set the rehab process back dramatically. It was really frustrating for him to digress. And he would try to work on it, but it seemed like something always held him back! I remember getting mad at him pretty much every night around March-April because he would work all day, then once the kids would go to bed he would start to rehab, but he wouldn't stop! It would be midnight and he'd still have a weight ball in his hand swinging it around! I was just worried he was going to kill himself over from exhaustion and lack of sleep! He would just say that it was addicting and he was feeling himself get stronger.




This just might be my very favorite
picture ever. Drew liked to do the
rehab exercises with his dad.

Once he made the commitment to go full force and get completely off the steroids, he once again felt so horrible that his rehab digressed again. But he knew that unless he had the steroids out of his system, he'd never fully recover. So by July, he was still pretty wobbly and had little strength.

FINALLY, NOW, a year later, he is back at the gym, he is starting to see improvement in his coordination, his balance is quite a bit better, but we still have much to do. And it's weird to find out the things that are actually a re-learning issue and not an inability issue. For example, about a week ago we for some reason decided to focus on the way he turns around. I knew he did it wrong, but I thought he was just unable to do it right. But it turns out he had just forgotten how to turn. So I showed him how I put my weight on the ball of my foot and pivoted. And within a few minutes of practicing and watching, he looked a million times better!

His first attempt to run made us both laugh. It was pretty sad! But he is starting to run faster. I raced him about a month ago. I ran down and back, and he just had to run back, and I still beat him. Tonight we raced up a hill with no head-start and we tied. From the waist down his running looks normal. From the waist up, he swings his left arm and his right arm doesn't move much. So there is work to do, but continual improvement.

The only thing he still doesn't have is side-to-side movement in his ankle. We have worked to try to get it back, but not much progress. So this may be a permanent loss, but we will continue to work on it.

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