Book Form (Part 4)

Bogus Prognosis

Through this whole process, I've become more and more detached with the whole idea of giving a patient a prognosis. Jared's mom, Linda, was immediately given a prognosis of 13 months by her doctor. I've often wondered if the negative prognosis hexed her ability to fight her cancer. Now I'm not saying she would've been cured, but she may have lived longer.

I can't imagine that anybody would feel it's their place to give a time-limit on another's life. Yet it happens all the time. Is it possible for a doctor to deliver a serious diagnosis without being negative and doubtful? ABSOLUTELY! They can deliver the news in the form of a challenge, rather than a death sentence.

After the whole episode with the physical therapy doctor being doubtful, I was determined not to allow his oncologists to place limits. And luckily they didn't. If they had, we would've gone elsewhere. I had already witnessed first-hand what happens in the mind of somebody internalizing negative predictions. They take all of the negative, and they exaggerate it or hear words the doctor didn't actually say, because they're coming from a place of panic and fear. And that's exactly what Jared did after the physical therapy doctor left the room.  I, on the other hand, could clearly see what this doctor was doing. He was trying to "cover himself" by giving a worst-case scenario, yet this worst-case scenario could've been detrimental on Jared's ability to recover by placing a mind barrier!!!

I've heard so many different stories - one person told me about his mother who had had a stroke 10 years earlier, a doctor told her she'd never move her one side again, so she gave up and never even tried rehab!!! She just accepted this one doctor's opinion as fact and gave up! Another was a person who, when his cancer came back several years after the first occurrence, the doctor told him at that point there was nothing they could do. He accepted it and passed away shortly after. After his passing, the family discovered all sorts of new treatment options they were unaware of that were proving to be much more effective! But because they had accepted his doctor's opinion as fact, they didn't do their research.

But I've also heard the flip-side. To share just a couple... One guy was told he had 3 months tops, and he wasn't willing to accept that answer, He is now three years out with no sign of cancer. He credits his diet change for saving his life. Another was told she had 2-3 months, but she, too, didn't accept it and was determined to find a treatment to save her. She's now 10 years out, cancer-free, from doing a clinical trial treatment. And my boss from 8 years ago was diagnosed with a terminal cancer. He was actually a medical examiner. He didn't accept his prognosis either. I think being in the medical profession he realized he had options. So he did a clinical treatment in Arkansas, and is doing great today! And his clinical treatment from 8 years ago is now the standard care for his type of cancer because it was proving to be so much more effective!

I read a book back in March about the power of the mind in battling serious illnesses. The author of the book had overcome more than one terminal illness himself, and spent 10 years at UCLA studying the power of hope. At the same time he would be asked by doctors there to "boost the spirits" of patients that had given up, and he'd personally watch the difference hope would bring. And he saw amazing things. One woman with breast cancer found that her tumor had shrunk in size! Another man was getting his will in order because he'd been found to be HIV-positive (this was many years ago when that was considered a death sentence). He had given up hope. But after meeting with this author and having a different outlook, he found out a few months later he was no longer HIV-positive! And nobody could explain it. I share only two of the many, many stories this author had witnessed over the ten years at UCLA.

Although it's hard to clinically prove that hope enhances the immune system, it is indisputable that feelings such as fear, depression, anxiety, and panic shut down the immune system.

So how would giving a patient a time-limit ever be beneficial? It creates an atmosphere where the immune system is compromised, making any treatment less effective!

I've heard many stories of people defying odds, and it seems like all of these people have a different "cure." For one, it was their diet change, for another, a clinical treatment, for another, a homeopathic remedy, and for another, injections of some sort. I've drawn my own personal conclusion. I believe it has less to do with the actual treatment, and more to do with the fact that it gives a person hope, allowing the immune system to kick in and do what it's there to do!

A couple weeks after Jared's diagnosis, I was once again awake in the middle of the night with all of these thoughts stirring in my mind - mostly about the impact a doctor can have on a patient by being negative and doubtful, and the words Bogus Prognosis came to me. I knew I had a new calling in life! It was catchy, and it was a phrase that described exactly the message I wanted to share - a message that empowers a person to decide their own fate rather than allowing somebody else to place limits! 

Here's what I've done so far: 

We don't deny the diagnosis, we try to defy the verdict!



Some of my favorites

Of all the current products, I think the "Little Motivator" kids shirt might be my favorite. I've looked around to see what kinds of cancer awareness shirts are out there for kids, and it was really disappointing - particularly the messages. The message of this shirt was inspired by both Jared and Linda. My kids are definitely Jared's "little motivators." I also think of Linda, and if one of my kids would've come to visit her wearing a "Little Motivator" shirt, I think it would've made her whole month!
 

The Fighter

I love listening to music. I always think of songs I want to download, but I never do it. I always get distracted somehow. Jared bought me an iTunes gift card, and after months had gone by, he started hounding me to use it! So he was sitting with his phone ready for me to name songs to download. The only song I could come up with at that moment was a song I had heard briefly a couple times that I liked, and I just knew it was called "The Fighter" by Gym Class Heroes. He downloaded it for me, and that was the only song we downloaded because of more distractions. So the next day I decided to listen to my new song, and for some reason I listened to the words this time, and I broke down.

"Give 'em hell, turn their heads,

Gonna live life til we're dead.

Give me scars, give me pain,

Then they'll say of me, say of me, say of me

There goes a fighter, there goes a fighter.

Here comes a fighter.

That's what they'll say to me, say to me, say to me

This one's a fighter."

 

 

I couldn't have found a more fitting song if I tried. I texted Jared the words. He replied, "Thanks, sweetie. I want someday for people to think that of me."

Jared, we already do.

Anniversary

October 15th will forever mark the anniversary of Jared's diagnosis with cancer. We will always remember this day as being the day our lives got turned upside-down. So today, on the first anniversary, I wanted to focus on the positives. I told Jared to make a list of ways his life has been changed for the better this past year, and I did the same.

Here's my list:

• My marriage is stronger than ever.
• My appreciation and admiration for Jared has grown immensely. He has handled his trial like a champ! I know it kills him not to be able to do things he could do a year ago, especially sports. Sports were his life. Yet he doesn't complain. He works hard and tries to get better.
• My appreciation for those around my family has grown. I'm always amazed at the generosity and kindness of others.
• I appreciate life more. I try to enjoy "moments" with my family.
• I see more of a "bigger picture" in regards to my life.
• I have a greater dependence on the Lord and realize that my life is completely and totally in His hands.
• I appreciate little things more. When I run up a flight of stairs and look back as Jared struggles to get up them, I am grateful and humbled.
• I focus more on things that matter, and care less about things that don't matter - I don't get as caught up in the "drama" of others' lives. I realize the lack of importance.
• When Jared used to travel, I couldn't sleep at night. I would get scared and had to start drugging myself to get a good night's sleep. Now when he travels, I can sleep!!

And here's Jared's list:

• I feel closer to the Savior than ever before, save a few mission experiences.
• I try to live more for the moment, enjoying the journey.
• I feel a greater closeness and appreciation for my family
• I have really had to rely on my wife for physical, emotional, and spiritual support. I have learned that she is very caring, hard-working, and truly loves me. For this, I will always be grateful.
• I have learned that Heavenly Father loves me.
• I honestly feel more blessed than I have at any other point in my life. I have been blessed a tremendous amount and I am glad to have recognized this.
• I realize that the Lord knows my wife and I intimately. He has helped us several times when we felt a little down by presenting uplifting stories, videos, scriptures, talks, and other things to lift up our spirits.
• I've learned to watch what you ask for. The Lord hears and answers prayers, and He knows what's best for us.

 

What is Real?

When our daughter Averie was born, she had a deformed ear. I asked the pediatrician about it and he said she had what's called a double-lobe, and basically when her ear was forming, the cells split and formed two lobes. It luckily didn't cause any hearing problems, it was all cosmetic. He told us that if it was a huge concern for us, it would be something that would require plastic surgery when she was old enough to perform the surgery. I spent hours analyzing that ear, wondering how a plastic surgeon could ever make her ear look "normal." There was cartilage where it shouldn't be, and lack of cartilage where it should be. And if they did repair it, there would most definitely be major scarring.

 

 

When Averie was about 3 months old, a remarkable thing happened. Her ear completely healed on it's own! I started noticing that it was looking better, but I thought at first it had to be my imagination. But within a couple weeks, it looked like a normal ear! The ear had repaired itself - it was a medical miracle!

Was there a reason we had this experience a few short months before Jared's diagnosis? Was this a reminder to us that medical miracles can, and do still occur?

I was told by a man on a cancer forum that I was delusional for being hopeful, and that I needed to seek help for myself. Statistics would certainly favor his argument. So should we just give up hope and accept that to be real?

Or is hope real?

My mom has a friend, Carol, who was told she had 2-3 months to live. And her cancer was spreading so rapidly that it didn't look good. Her hope led her to research different treatment options, and Carol is alive today, ten years after doctors had given her zero chance.

I choose to believe that our hope is real. We've had too many experiences to deny hope. And I could lie and say that I've never had my doubting moments, but in those moments something seems to always happen to shut down those doubts, and I hear the same words again and again... Where is your faith?

Jared was given a blessing prior to our knowledge of his cancer. That blessing had specific promises, promises that seemed impossible. I doubted those promises in those hours while Jared was in surgery having the tumor removed. I had known of four people with his cancer, and none of them lived past two years. So, in my mind, those promises couldn't be real. Then the doctor returned, completely perplexed that the tumor was encapsulated - something he'd never seen and couldn't explain. I knew at that moment I had to move forward with hope and never let myself return to that dark place.

In December, Jared got an infection, an infection we learned later had the benefit of triggering tumor-fighting cells in his brain.

In February, we were at my parents' house watching a movie about a grizzly bear. In the movie, the grizzly bear had mauled a man, but the man survived with serious injuries. For some reason the thought came to my head Maybe cancer is like this grizzly bear. You can be as hopeful as you want, but the truth is, you wouldn't stand a chance against something that big if you came face-to-face. The thought definitely depressed me. At the end of the movie, the grizzly bear escaped it's cage and was out free. It ran full force toward that same man, and I thought to myself This is it. He's going to prove my point. Then, the grizzly bear stopped right in front of the man, looked at him for a few seconds, and turned and ran in the other direction.

In July, we were told that Jared's tumor would be analyzed and tested as part of a study in hopes to advance treatments in brain cancer.

A couple weeks ago, Jared was out of town for work and I was watching one of our favorite shows. In the show, a lady was talking about the joys of becoming a grandma. It made me sad to think that Jared might not be able to ever experience those joys. After a few minutes of being really down, I decided that the Lord would know what I needed in that moment. So I decided to go to a website to read some scriptures.  This was a website I had been to many times before, in fact almost daily. But this time there was something I'd never seen - a new video right on the home page. (And I might add that I've been to this website many times since and the video is no longer there. It was just this one time.)  I decided to click on it, not knowing what to expect. It was a Bible story taken from the New Testament in Mark, Chapter 5.  It's a story of Christ going and healing a girl. Everyone around him mocked him because they thought she was dead, and they doubted he could do anything to help her. He touched her and she was immediately healed.

I believe hope to be real.

Disneyland

Three years ago, we took a family trip to Disneyland during the fall break. It was the perfect time of year to go, and we had so much fun that we decided to do it again the next year! The annual October trip became one that my kids started looking forward to. Last year, Jared just didn't have the time off of work to go. My kids were really disappointed, but I was as well. And I was a little mad that Jared hadn't managed his time off well enough to make it happen. But it turned out to be a blessing. The fall break last year happened to be the week that we found out about Jared's cancer.

Family vacations are something I live for! And there's nothing quite like watching kids at Disneyland. When Brynlee knows we have a Disneyland trip planned, it's all she talks about for months!!! And I know one day my kids will no longer enjoy the "magic" of Disneyland, so I feel like time is limited.

When Jared was in surgery getting his tumor removed, I wondered if we'd ever be able to enjoy any family vacations again. So you can imagine how exciting this trip was for all of us!

We stayed in Oceanside in some condos that were right on the beach with my sister's family and my mom. When we weren't at the beach, we swam at the pool, played games in the large game-room facility, walked the pier and got ice cream in the diner on the pier, explored the marina (Drew has a huge fascination with boats, and we actually saw a walrus and some sea lions up close!), BBQed by the pool, stayed up late - it was so much fun!

And we did take a day at Disneyland. It was a long, hard day for Jared, but he enjoyed himself. By the end I could tell he was completely worn out. We didn't stop much and he had done a LOT of walking! He really wanted to go with the kids on the craziest rollercoaster at the Adventure park, but I didn't let him. I knew he was a seizure risk and didn't want him to have a seizure and ruin the rest of the day for the kids. (I think that's what finally made him stop - realizing that if he had a seizure, it would ruin the day.) Maybe next time! I think it took him a few days to recover from Disneyland, but I think he'd say it was all worth it!

I can describe the trip in two words - absolutely perfect!

 

 

 

 

Zofran - the Wonder Drug!

This last round of chemo didn't go quite as well. The first night of chemo, Jared was up sick the entire night! And I mean SICK - he was running to the toilet about every 15 minutes the entire night. I couldn't figure out why this time had made him so sick - the dosage hadn't changed, and he'd always tolerated the chemo pretty well.

The next day he figured out the problem - he forgot to take his Zofran!! He has so many pills he takes at night, he forgot to throw in the Zofran! (Zofran is the anti-nausea pill he takes 30 minutes before he takes his chemo.) I don't think he'll ever make the same mistake again!

Lesson Learned: Just how poisonous this chemo stuff really is, and just how strong Zofran really is!

Can't wait to be off this stuff - just three more rounds! (Fingers crossed...)

(I was having issues with the format and letter size of the book form entries - probably for putting too much information on the pages.  So this is where the chronological, book form ends.  Sorry!)