Fair Warning

I was warned that Jared's death would be harder than I could've ever imagined.  I thought I was prepared.  Well, I was wrong.

The first week was actually pretty easy.  Surprisingly easy.  I was so consumed with preparations for the funeral that I was exhaustingly busy.  And we had so much family around all the time that there was never a dull moment.  Not only that, but I had such a feeling of comfort all the time, I knew Jared must have been close by.  I expected to cry myself to sleep, but my bed supplied the most peace of all.  I also felt like he was helping me with decisions, as crazy as that sounds.

One decision that I know he helped me to make was where to bury him.  This was the one huge question I had always had.  I didn't ever ask him.  I was hoping he would bring it up.  After his passing, the only thing that made sense to me was to bury him in the same cemetery as his mom, in Providence, UT.  It is only about 10 miles from my parents' house, and I knew we could go up there every month or two.  My mom, my sister, and I drove up there last Tuesday to pick out a plot.  I woke up with a huge headache, but I knew it needed to be done.  We finally made it to the cemetery after lunch and began looking at what they had available.  It was awful!  There weren't any trees, and there weren't many gravestones around.  It just seemed to be completely isolated.  And it wasn't anywhere near his mom's grave.  I was pushing the horrible feeling I had aside.  I even asked the guy if I could change plots, thinking that would make me feel better, but it didn't.  As we drove to the city building to pay for it, I just felt sick to my stomach.  I was telling myself it was because it was so expensive for such an undesirable location (knowing that the price wasn't ever an issue).  So I paid for it and left with a pit in my stomach.  As we were leaving the valley, I started expressing doubt and my mom and sister insisted that I go check out the Logan Cemetery.  My dad owned quite a few plots there.  Apparently he had been bugging my mom for days to have me check them out, but nobody wanted to say anything because I was so insistent on Providence.  When I saw the spot in the Logan Cemetery, I just KNEW that was the place.  It was a beautiful, shaded area in a beautiful cemetery.  And he wasn't alone!  We had to call the Providence Cemetery to cancel my payment, and made some last-second phone calls to the mortuary and the newspaper to change the obituary.  But it felt right.  I felt like I had a huge weight lifted, and my headache was gone.  My sister says my demeanor completely changed.  So Jared was definitely trying to voice his opinion!!  He will get a lot of love where he's buried - my dad walks through there every day on his way to work, and my mom goes there often.  And it's so close to my parents' house, the kids will be able to go there a lot when we visit family in Logan.

 

On Thursday Jared's brothers, his dad, his friend Brent, and I went to get Jared ready for the viewing.  He looked great!  When he passed away his forehead had a large gaping incision from the most recent surgery that hadn't healed up very well, and they had completely covered it so that it wasn't noticeable.  He looked so much better.  We were all very pleased.  His family had mentioned that there was a special feeling in the room, like his presence was there.  I told them that I didn't feel any different, that the special feeling they felt had been with me consistently since his passing.

 

Later that afternoon my brother told me he had a surprise for me.  He had written to the University of Oregon Athletic Department, and the football team sent my family a game jersey signed by the head coach.  We also received the 2013-14 basketball team shoes, custom-made in Jared's size, along with a basketball signed by the entire team.  What a great keepsake for my boys!  And what a great organization for taking the time to do that for my family!  Jared would be very proud of his Ducks!

 

The viewing and funeral went as well as I could've possibly expected.  We had decided to close the casket the night before the funeral.  I wanted to be able to take our time saying our goodbyes, rather than being rushed right before the funeral.  I'm happy we did it that way.  Brynlee made a book of memories to be buried with her dad, Jace wrote him a letter, and Drew made him the cutest little picture of the two of them holding hands.  I kept a copy of all of it for the kids to keep forever.  We also buried Jared in a Ducks bracelet, and all of us have a matching bracelet.

 

The funeral was very fitting for Jared, full of funny stories.  I didn't have Brynlee on the program, but she insisted that she wanted to talk.  I'm glad she did.  She shared memories that I had forgotten about.  Her talk was very sweet.

 

After the service and a quick lunch, we headed to Logan to the gravesite.  My dad offered the dedicatory prayer on the grave, and that was it.  Right after we left, they buried him.  That part was really hard for me.  I keep having to tell myself that it's just his body that is buried, but his spirit lives on.  It's hard to think I was just with him, breathing, just a few days ago, and now that same body is underground.

 

Sunday night we came home... home to reality.  And it hit HARD.  Sunday night I was having a hard time, and as I tucked Jace in bed, Jace started to cry.  I felt so bad.  I told him that I missed Jared, too, and that after I left, I wanted him to pay close attention to the way he felt, that he would notice a really peaceful feeling come over him.  (It had been that way for me, so I knew that same comfort must be there for the kids as well.)  Monday morning he told me that I was right.

 

Yesterday (Monday) was absolutely awful.  I started having all the feelings that I had been warned about - angry at Jared for leaving me (which surprised me), overwhelmed at the road ahead of me, mad that my kids are left without their dad, extreme loneliness, pretty much complete despair.  But it was weird - until now I'd never experienced complete depression and comfort at the same time.  I still had that element of peace, but overall I would sum up the day as unbearable.  And I was so upset that I didn't care to see or talk to anybody.  Jared's dad came over with his friend, Rex.  Rex lost his wife 4 months ago.  And although I was resistant to seeing him, I was SO glad he came and talked to me.  I was fighting tears the whole conversation, but he gave me hope that things might actually at some point get better.  He told me that the first month was absolutely unbearable, so bad that he wouldn't wish it on his worst enemy.  But he said it slowly gets better.  He said that right now he's not exactly happy yet, but at least it's bearable.  As horrible as that sounds, I'm really looking forward to bearable.  What I'm living right now is awful.  Even though Jared was so bad off at the end, and couldn't communicate, at least he could show me he cared by tickling my back or playing with my hair.  I miss that.  I just flat out miss him like crazy.  I really hope this gets easier.

 

Jared's friends that traveled from Oregon.  It was so good to finally meet some
of his buddies from high school that I've heard countless stories about!

 

 

Transition

Jared decided it was time to leave us on Friday, October 18th. 

Thursday night his breathing was much more labored, and in the night I started hearing the rattling sound in his throat, so I knew it would be soon.  I didn't sleep much Thursday night.  Friday morning Jared's sister texted me and asked if Jared was doing the same, or if he was getting worse.  I told her I thought he could pass at any time.  Within a few minutes, most of Jared's family was at my home.  My parents were both there, and my sister and her husband showed up as well.  We had a big group.  The hospice nurse came at 11:00 and checked his vitals.  His heart rate had gone from 120 on Thursday to 24.  So we knew his body was shutting down.  She told us she thought it would be that night or the next morning.  But he went quick.  He passed away a little before 1:00pm, with his sister at his side holding his hand.  We all feel that it was no coincidence that he passed away exactly five years after his mom.  We believe that was her way of showing us she was involved in helping him make the transition.

All of the kids were gone but Drew.  He came home from preschool at 11:00 and he stayed downstairs watching cartoons.  That was a huge blessing not to have any of the kids near.

I had Drew come and give him one last kiss.  He obviously didn't know what was going on. 

I really debated whether to bring the older kids home from school before they took his body.  As he started losing color, I decided not to because I didn't want them to be traumatized.  He didn't look good.  Jared's sister, Marianne, offered a prayer after he passed, and blessed me to know what to do regarding the children.  A little while later I just knew they needed to at least be given the choice.  Jace had been really worried a couple days earlier that Jared was going to die while he was at school, and I knew it would be hard for them if I just brought them home from school telling them that their dad had died, and he was gone.  As I left to go pick them up, my dad grabbed my arm and said, "Leslee, don't tell them he's dead.  Tell them he's dying."  I'm SO grateful for that!  When I picked them up, I told them that we knew dad was about to die, and that I wanted to give them the chance to say goodbye before they took him away.  I warned them that as the body dies, it changes color, and told them he would look very sick and pale.  I told them they didn't have to see him.  They both chose to give him a kiss.  His body was still pretty warm.  My sister-in-law took them to her house afterward so they didn't have to watch his body being taken away.  I truly believe that Marianne's prayer made all the difference.  I feel very at peace with how everything was handled.  And I think my kids had the appropriate closure.  They seem to be doing very well.  Even Jace.

I will always have sweet little memories of my little kids with their dad in his final days.  The last few days before he became bed-ridden, Averie insisted on helping me whenever Jared walked anywhere.  I would hold his left arm, and Averie would run over and grab his right hand.  She would always say, "Help daddy."  It actually made it hard for Jared to walk, and he would try not to trip over her, but I didn't have the heart to tell her no.  It was so sweet.  She wanted to help her daddy.

The day before Jared passed away, Drew went to show daddy his sticker, and he kept trying to wake him up because he really wanted him to see it.  I told Drew to give daddy a little kiss.  He said, "Will that make him wake up?"  I wish, buddy, I wish.  Drew was always making his daddy laugh, and I'm sure Jared would've loved to see his sticker.

 

I should also add that my sister's husband was so sweet to drive down from Logan after my discussion with Jace.  He spent the day with him.  Nick's dad died in a tragic work accident when he was 8, and Nick was the oldest of four kids.  He was the perfect person for Jace to open up to.  He said that Jace's main concerns were that Jared was going to forget him, or that he would forget Jared.  I think it helped Jace to hear about Nick's experience and to know that Nick hasn't forgotten his dad.

Since Jared's passing, we've been reminiscing about how funny he was.  And I've been going through pictures.  I think I had forgotten what a fun person he used to be before cancer.  I'm remembering fun things he used to do with the kids, things I had forgotten about.  His passing has allowed me to do that.  He's no longer stricken with cancer.  I think that's why I've been so at peace.  He is now himself again.  And I'm so happy for him! 

Brynlee's question the other day has gotten me thinking.  I've never really given deep consideration as to why Jared got cancer, but I needed to figure it out to be able to give my kids an honest, well thought-out answer.

 

For some reason this past few days of thinking, and reading thoughts and comments from those who knew him, that answer suddenly became pretty clear.

 

Jared had lived such a good, decent life, that our Heavenly Father knew he could trust Jared to be a tool to influence others' lives for good by going through these past two years, and handling it with such dignity, grace, courage, and humor.  Jared taught me a lot through his battle.

 

Jared never complained.  He would get REALLY frustrated with his lack of ability, but he never complained.  When I talked to him about it a couple months ago, he said he learned from his Grandpa (who died of lung cancer) that you "take it like a man, and you don't complain."

 

He also proved that addiction can be overcome.  He was on steroids for 9 months.  His body became completely dependent on them.  And he HATED that.  He hated feeling addicted to something.  So he was determined to get off of them.  It took MONTHS of struggle and determination, but he did it.  His doctors were amazed.  They said that most people aren't willing to deal with the horrible side effects of getting off of them.  But he did it.  I remember one day in particular that he was suffering horrible side effects from tapering, and we took the kids to Hogle Zoo.  He had to sit and rest every few minutes because it was so hard for him.  He could've taken more steroids that day and felt great, but he was determined. 

 

I also loved that he joked about his cancer.  If he forgot something or couldn't come up with an answer, he would blame it on the brain tumor.  He also told me that one time at work, a guy from the FDIC was telling a story, and said that somebody had...  and then he didn't finish the sentence, so Jared figured out that he was afraid to say the word cancer around him.  He said it was so awkward!  Jared never understood why people would tip-toe around the subject.  He didn't let cancer define who he was.

 

I've also realized that the reason I've been able to endure this trial well was because HE did... period. 

 

If the whole purpose of life is to endure to the end well, Jared endured like a champ!  What a wonderful legacy he left for me and the kids, and I'm so grateful for that!

 

I take such comfort in knowing what a good person he was.  And I wasn't afraid of his death.  And that's the greatest gift he could've possibly given me.  I think there's a huge lesson to be learned there, too, for all of us.

It's Time...

I kept dragging my feet on Hospice, but it's official.

 

Friday I knew Jared wasn't doing well.  I felt like he probably needed Hospice, but I felt such a huge sense of guilt in making the decision.  I felt like I was choosing to kill him.  That's not a feeling you understand unless you've lived it.  I finally decided to text all of his family so they could ease my burden.  The feedback was that they supported my decision 100%, and that they felt I couldn't keep doing what I was doing.  So that made me feel better, but I was still dragging my feet.  My mom took most of my kids home for the weekend, so I felt like I could focus my attention completely on Jared and his needs for the weekend.  So I held off.  Saturday I called my new friend, Diane, who I met through Jared's sister.  Her husband died of brain cancer five years ago.  It was so good to talk to someone who's been in my shoes.  She really helped me with decision-making and gave me a lot of advice.

 

Saturday night Jared was up all night long, wide awake, and really fidgety.  And he kept making this deep hiccup sound that I could tell was painful.  I didn't sleep at all.  Sunday morning he really seemed to be suffering.  He has a really difficult time communicating now.  I have to get right in his face and ask things a couple times before I get a response.  He just seems gone.  I asked if he was suffering, and he nodded.  After a few questions, I found out that he felt a lot of pressure in his head.  That was the moment that I realized things were out of my hands, and that by not putting him on hospice I was actually making him suffer.  So I gave him Percocet to make it through the day.

 

I had Brynlee home alone, and knew I needed to talk to her about the situation.  I really wanted to talk to my kids separate so I could address individual needs.  Brynlee was shocked.  (Up until now, my kids have actually been doing really well.  They didn't understand the situation because their dad has been in and out of the hospital a lot, but mostly because of other issues - infections, blood clots, etc.)  She asked me if there was any chance at all that he could be around in a year.  I said, "Yes, there's a chance.  But that would be a miracle."  Later that night she told me she believed in miracles.  I told her that I did, too, but that if we didn't get one, we'd be okay.  The other thing she asked that broke my heart was, "Mom, why did Jesus give dad cancer?  Is it because he was bad?"  I'm glad she asked, because I don't want my kids ever thinking that and not having that question addressed.  She was very sweet, and I think she'll be okay.  She has a very mature understanding.  I told her I was very proud of her for the way she's handled these past two horrible years.

 

Monday morning I talked to Jared and told him that I really thought he needed to have a nurse come to give him his pills through an IV, and I wanted to get him some morphine for relief.  He agreed.  I also told him about my conversation with Brynlee.  He doesn't seem all there, but I knew he understood because he got teary-eyed.  That afternoon I called hospice.  I broke down on the phone.  It's not an easy call to make.  The nurse came out that afternoon and mostly just inserted a catheter.  After she left, I was trying to talk to Jared and he got this horrible look on his face.  I asked what was wrong - he seemed to be in a lot of pain.  A minute later I turned around to see that Averie had yanked out his catheter!!!  I felt SO bad!  Jared and Averie are just not a great mix right now.

 

Today has been the worst day of all.  He looks absolutely miserable.  When he's awake, his eyes are barely open.  I have to get right in his face to talk to him, and most of the time I don't get any response.  Now that he has his morphine he's been sleeping and looks much more peaceful.  They also gave him Ativan.  They said that once your body starts shutting down, you start to panic.  It's an anti-anxiety medication to help relax him.  He looks a lot more comfortable now, so I'm happy for that.

 

Today I took Jace for a drive and broke the news to him.  He had a really hard time and cried a lot.  Tonight he seemed to be doing a little better, but I just feel so bad for him.  Jared is his best friend in the whole world. 

 

I've survived this past few days completely and totally thanks to Xanax.  Without it I would've been a total mess.

 

At this point I've been told mixed things.  I've heard that he's gone downhill so quickly that he could go really fast, but I've also heard that his vital signs are still strong, so it could be a couple weeks.  Either way, days are numbered.  It could be tonight, or it could be days.  I think everybody who has seen him the past two days all feel the same way - the quicker the better.  He's suffering.  And it's awful to watch.

 

Today is officially the two-year anniversary of his diagnosis.  We should be celebrating, but it's hard to celebrate when he's slipping quickly before my eyes. 

 

Survival

Last night I had a nightmare.  I was in a dirty hospital and a nurse kept injecting something into an IV in my arm that was making me weak and groggy.  I was completely aware and terrified of what was happening, and I kept trying to escape, but the nurse kept finding out and catching me because I was so slow and weak.  Then she would inject more debilitating serum.  It was taking over my whole body.  It was awful!  I think that must be how Jared feels.  Luckily I woke up and the nightmare was over.  For him, it's reality.  I can't even imagine.

 

I can't believe 3 weeks have passed already.  The days have been REALLY long, but somehow we're surviving.

 

I should probably start where I ended off last time.  It became clear pretty fast that Jared wasn't being defiant when he wasn't asking for help, he was either forgetting to ask, or he just flat out couldn't figure out how to ask.  I even had him practice yelling my name.  He can do it in that moment, but two minutes later he doesn't remember.  So you can't really be mad at someone for what they can't do.  But it doesn't mean it's not stressful!

 

His first night home he tried to get up in the middle of the night to go to the bathroom.  I quickly jumped up to help him.  At night he takes a sleeping pill, and he can't walk AT ALL.  Without help, he would definitely be flat within a couple steps.  In fact, even with my help he is really wobbly.  We've had a couple of near-falls.  His first night home was when I had my first official panic attack where I felt like I just couldn't cope with anything.  And it was a really scary feeling.  I realized that I had to go on medication.  I have been fighting it for months, knowing I probably should, but there was a part of me that felt like a failure having to go on anxiety meds.  But at that moment I realized I didn't have a choice.  I can't fall apart when four kids are involved.  I went to see my doctor a few days later, and we've decided on a 6-month Zoloft plan, and hopefully I won't need it after that.  They also gave me Xanax until the Zoloft kicks in completely.  That first few days before getting on the medicine I felt myself getting panicked over a lot, stuff that wouldn't normally effect me. 

 

Both my doctor and Jared's oncologist said that they can't believe I waited this long to get on something.  I told Jared's doctor that looking back, and now that I understand how the body works, I should've done this back in January when I originally started getting headaches, dizziness, chest pains, etc.  He said, "Would've, should've, could've - maybe you can use your example and experience to help others."  So that's what I'm doing.  I have been feeling a little better, but it makes me tired.

 

This past few weeks I feel like I'm taking care of a stranger, yet when I look in his eyes he's still in there somewhere.  That's the hardest part for me - that it's him, but it's not him. 

 

He has been able to get out and try to enjoy life as much as possible, but just doesn't seem to care much about anything.  Or maybe it's just that he can't express himself.  Jace had an incredible season in football, scoring 12 touchdowns in 7 games.  Jared normally would've been a very proud dad, but the games he went to, he just watched quietly and didn't say a word, didn't cheer, nothing.  I think he enjoys it, but it makes him sad.  And the other night I officially knew he wasn't in his right mind when Neil came over and asked if he had been watching the Ducks game, and he hadn't.  That is unheard of!!!  (If you remember, he was demanding the game to be turned on just minutes after coming out of his first, 8-hour brain surgery!)

 

 

He says about 10 words a day, mostly yes and no, and most of the time he'll shake his head no while he says "yes" or vice-versa.  So I have to figure out the true response.  And even if I give him options, I keep repeating the options, and then ultimately I have to give each individual option and he'll respond yes or no.  He also whispers a lot.

 

Somehow, miraculously, we've avoided falls up until last night.  And after last night's fall, I've realized that if he's going down, he's going down.  There's no way for me to stop it.  Luckily he wasn't close to anything to smack his head.  He was close to the bed, so after about 15 minutes of struggle I was able to get him back in bed, but I was about to give up and make him sleep the rest of the night on the floor.  I'm definitely starting to worry about his safety, as well as my own.

 

A couple weeks ago we met with the oncologist.  He showed us the "concerning" MRI, and explained that most of his speech issues and lack of cognitive ability is due to tumor (I had thought it was from swelling).  He says that we will keep going with Avastin and do another MRI at the end of October.  If it seems to be working and maintaining his quality of life, we keep going.  If he starts to digress, we stop and basically give up.

 

This past few days I've noticed some slow digression.  Today he was scheduled for another Avastin treatment, but he said he felt too loopy and weak and didn't want to go.  So I re-scheduled for Monday.  I definitely have an internal struggle right now.  I feel a huge weight of responsibility.  In his warped mental state right now, he is content.  But the "real Jared" would be absolutely horrified and humiliated if he could see himself.  He always joked that if it got bad, he wanted me to strap him into a wheelchair and push him off a cliff.  But now it's bad, and he wants to live.  So who do I honor?  The "real Jared?" or the "warped-mental-state Jared?"  I've been sick to my stomach the past couple days trying to figure it out.

Definitely some hard decisions to be made soon.