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.

Rehab Rollercoaster

Rehab definitely had it's ups and downs.  Overall I think we left today with a good taste in ours mouths.

 

Things were going pretty well until Sunday.  I got there and his room was clean and empty.  I asked the nurse what happened to the patient in the room, and she had a serious look on her face and said she needed to talk to me.  I'm pretty sure my heart skipped a beat.

 

She said that Jared had been really defiant all night, getting up without using his call button for help, and it kept setting the bed alarm off.  Then, that morning he kept saying he wanted to go home and he was acting upset.  So they had to move him to a shared room that had 24-hr supervision. 

 

That didn't make any sense to me.  I had been with him the night before and he seemed fine.  When I got to his new room, I immediately saw his roommate (who I guessed to be about 80-yrs-old), and then I saw Jared.  I wish I could've caught the look on his face on camera.  Let's just say he did not look happy!

 

Jared's brother got there right after me, and we both agreed that this arrangement just wasn't going to work.  So we tried to talk to the head nurse.  He again told us what had happened (I should add that they hadn't said a word to Jared, they just wheeled him off to another room with no explanation).  He made it sound like Jared was trying to break out of the place.  Jared said, "No, that's not it."  He was trying to explain what happened, but had a hard time because he still has a hard time getting out what he's trying to say.  Basically he was trying to tell his nurse he was wanting to get back to his bed, but he was saying home instead of bed.  He was saying it wrong, and getting upset because they weren't understanding what he was trying to say.  What a bunch of idiots!  He's in their facility for speech issues and they're punishing him for it!  They wouldn't budge on putting him back.  They said he had to use his call button for at least 24 hours before they would consider getting him his own room again. 

 

We spent the afternoon in the main commons area.  We watched a football game while those around us were playing cards and dominoes.  I tried to catch a picture, but it wasn't great.  I felt like I was in a nursing home.  It was so depressing that I started to laugh.  I couldn't believe it!

That night I told him if he had a hard time sleeping he needed to demand earplugs (knowing he probably wouldn't know how to ask for earplugs).  So I went to the hospital on Monday expecting to have to fight for his own room back, and keeping my fingers crossed that he was compliant!

 

When I got there, I was shocked that he was actually really happy and said that his roommate was a cool guy!  He said he didn't care to have his own room.  In fact, he didn't even have the curtain closed for privacy.  It was one big party! 

 

I spent Monday in rehab with him.  They told me if I came and worked with him in rehab it would speed up the process getting him home because we would all be on the same page and they could address my concerns.  They taught me how to help him up and down the stairs, something I don't plan to do anytime soon!  I'm supposed to stand below him and hold on to his belt when he goes down the stairs.  They said if I'm standing right, I will be able to sustain his weight if he starts falling down the stairs.  I don't dare to even try to see if they're right.  We also went for a long walk, and they showed me how to hold onto his belt to get the most support.  Jared said he felt like I was walking my dog.  He doesn't like any of this very much.

 

That afternoon I got to know his roommate and family.  They're from Cache Valley, so we had that in common.  They were very nice people.  The man had a stroke a week earlier and had lived a very active lifestyle before that point.  In fact, his wife said if he didn't make it snow skiing this winter, it would just about kill him!  He's now my new hero - 78 and still skiing - what a stud!  And he must have been about the most social 78-yr-old in Cache Valley because he had nonstop visitors!  I actually left that night feeling like Jared had support while I wasn't there, which was nice.  They seemed to take good care of Jared.

 

Yesterday when I got to the hospital, Cheryl (the roommate's wife) told me she had a really cute picture to show me of the two boys.  When I saw the picture, I told her that Jared had the same shirt as her husband.  Long story short, the dumb nurse put Jared's clothes on his roommate!  My brother came to visit right after I saw the picture, and we were both laughing hysterically!  I still get a good laugh every time I look at the picture.

Today they released him to come home.  He was more than ready to be back home.  He's been in the hospital for 2 weeks.  I was actually sad as I gave Cheryl a hug goodbye.  It seems like you bond quickly with others that are going through similar struggles, regardless of age.

 

So he's home.  I've already given the full lecture on him needing to call me EVERY TIME he gets up.  So far, not so good.  So one stressful situation ends, and a new one begins.  Our big decision now is this:  If we use home health care, they don't do much and he is confined to being home, meaning he can't go to family BBQs, football games, activities, NOTHING.  The other option would be not to have any help at all, but I am REALLY OVERWHELMED by that option.  The third is to have hospice, and they do much more, and he has freedom to go wherever he wants, but insurance won't cover it unless we agree to stop all treatments.  I'm not happy with any of the three options, so I'm not quite sure what we're going to do.

"Angry Mode"

Back in April, I took Jared to get an MRI prior to his surgery.  We started walking in the general area of the rehab facility, and we both said that it gave us the creeps.  We both said we couldn't handle walking through there again, even if it was just to reminisce about old times.  So when I say that he's back there now, you know times are pretty desperate! 

So much to say here, and a lot of awful moments to relive...

 

Jared wasn't recovering very well from this surgery.  They kept him in the hospital a day longer than anticipated because his drain was draining more than they wanted, and he was really nauseated this time.  When he finally did come home, I was a little nervous that he wasn't doing well but I was just glad to have him back home after spending 10 days in the hospital.  And I was really frustrated with the whole situation.  I started wondering if we were over-treating him.  It seems like every time we go to the hospital, they do way more than he can handle.  And he HATES the hospital.  He gets depressed spending so much time there.  So I had made the decision that we were done with that place.  I think he felt the same way.  Right before surgery he was feeling the best he had in a while, and after surgery he was horrible.

 

He was once again given a PICC line with heavy antibiotics, so we knew he wasn't going to feel well for a couple weeks.  The night he got home, he started having seizures.  I wasn't too worried until the next day when they continued.  Usually he will have one, maybe two in one day, but that is extremely rare.  But he started having a LOT of them.  That first full day home he probably had 8 seizures.  I kept asking if he wanted me to call the doctor, and he said no.  We both knew if we called the doctor, they were going to send us straight back to the hospital.  So we decided to adjust his medications a little to see if we could get them to go away.  The next day he continued to have seizures.  He probably had about 10 that next day.  I was a wreck because I didn't know what to do.  I didn't want to drop the ball on his care, but I didn't want to send him back!  He wanted to be home.  So the following day I called his doctor and told him we did not want to go back to the hospital.  He said he thought his brain was probably just going through trauma from the surgery, and he expected them to go away.  He told us to get some labs drawn at a local hospital to make sure the antibiotics weren't throwing off the anti-seizure pills.  He also told us to give him another pill that relaxes the body.  He thought it would at least make the seizures less frequent or decrease the strength.  So once he started taking those pills, the seizures stopped altogether.  The pills make him completely out of it.  So I knew for a couple days he would probably sleep all day, which he did.  But at least the seizures stopped.

 

Over the next few days he just didn't seem to be getting better.  In fact, he seemed to be declining.  I also noticed that his face was drooping on one side and he had lost all movement in his right arm.  He also started jumbling and slurring his words.  So I thought he must have had a stroke at some point.  His face and speech eventually recovered.  I started getting worried that he just wasn't going to pull through the effects of this surgery.  Usually a week after this type of surgery he's doing pretty good.

 

Last week was probably the worst, most stressful week of my life.  On Monday he was doing horribly, but Tuesday he seemed to be doing quite a bit better.  Wednesday he wasn't doing well at all.  He threw up in the middle of the night, and then again at his MRI.  He wasn't talking much, and just seemed "off."  I knew we had an appointment with his doctor the following day (Thurs), so I figured he could address our concerns.  Wednesday night at about 9pm I woke him up to go to the bathroom for the night.  He seemed really tired, and when I helped him sit up, he fell back on the bed.  I gave him a few more minutes to wake up, then I tried again.  He finally got to the point that he attempted to stand up, but immediately collapsed on the floor.  And he had a completely blank look.  I called a neighbor to come help me get him back in bed.  A couple other neighbors showed up to help.  One of them is a firefighter and reminded me that I needed to make sure he took his pills for the night, and that if he started having seizures during the night I probably needed to call an ambulance.  After they left he seemed like he had perked up a little, so I tried to get him to take his pills.  I cut them up in smaller pieces so he'd have an easier time swallowing.  He barely got the first one down, so I decided just to give him the most important pills, but on the second pill, he choked and threw up everywhere.  At that point I truly thought he wasn't going to make it through the night.  I was there the night that his mother died, and he was showing a lot of the same signs.  So I tried to make him as comfortable as possible by cleaning him up the best I could, then I got a towel and tried to lift him up to stick the towel under him.

 

I told the kids that dad wasn't feeling well, and had them give him a kiss and tell him they loved him to help him feel better.  I tried not to be dramatic.  I didn't want them to panic. 

 

That was a long night.  I didn't sleep much.

 

The next morning came.  I called his doctor and explained the situation and told him I didn't think there was any way I could get him to the appointment.  He said I needed to take him to the ER.  I told him that I didn't want Jared to die in the hospital.  I wanted him to be at home with his family.  He said he understood, but that Jared needed to be assessed so that they could make some decisions.  Three neighbors came over and carried Jared to the car, and I drove him to the ER.  He was alert, and seemed to understand everything I said, but he couldn't say much.  Basically just yes and no.

After being in the ER a few minutes, a lady came in and told us they were getting ready to transfer him to his room.  I told her we didn't want that, and asked why they were hospitalizing him!  She thought that the doctors had come and talked to me to explain the situation, but they hadn't.  She basically said that his MRI was extremely concerning, to the point that they were putting him in the Neuro Critical Care Unit.  That was all I needed to hear to be okay with him being hospitalized, but I was really mad that if his MRI was "extremely concerning," why hadn't they called us immediately the day before?

I called the oncologist to see if he agreed with what they were doing, and asked if they had seen the MRI.  He said they had seen it, and that they agreed he needed to be in critical care.  He said that he knew it was concerning, but didn't know he was doing so horribly, otherwise they would've taken action earlier.  Basically the MRI showed that his brain had extreme swelling EVERYWHERE, which is why he was completely shutting down.

Later that afternoon the oncologist team came to see him in critical care to explain the situation.  There was extreme swelling, but also some new cancer activity.  Once again they expressed that they were surprised with how much activity in so little time.  (We seem to be getting that news a lot now.)  They were pumping him with sodium to pull some of the swelling from the brain, but they said it was a short-term fix.  They told us they needed to start the Avastin as quickly as possible.  They normally like to wait 4 weeks after surgery (because it inhibits the ability to heal) but they said they didn't have a choice but to get it started.  So Avastin will help the swelling, the big question is how long.  So eventually all of this will all happen again, and there won't be any "fixes" next time.  That's the part I try not to think about.

That first day in the critical care, he couldn't answer basic questions.  He didn't know the month or year, he couldn't say my name.  The nurse would try to give him options for the answers and tried to get him to show which answer was right with his hand. 

The next day (last Friday), he was able to say my name again, and he seemed much more alert.  He couldn't remember much of the two previous days.  But he still couldn't figure out the month or year.  He would always answer February and 1980... and then couldn't figure out which year in the 1980s.

Our time in the Critical Care was actually entertaining because I knew Jared's nurse.  He was a guy I hung out with in college, and both Jared and Neil remembered him because he was THAT guy at the party that was so loud and funny that you don't forget him.  He kept all of us laughing, which was much-needed at the time.

He stayed in critical care until Saturday night, and then they transferred him to a regular room at Huntsman.

He was making daily improvement, and he got movement back in his right arm.  But reality hit again on Tuesday when the speech therapist came to assess him.  I knew he had been giving short answers, but I didn't realize how severe the problem was.  She asked him what his kids did during the day, and he gave no response.  She asked him a list of questions with short answers, and some of the really easy questions he was missing.  For example, she asked if the lights were on, he responded "no," and they were on.  She also asked him to list as many animals  as he could in one minute, and he couldn't list any.  After the assessment, she explained that some of the neurons in his brain were damaged, and that he needed to re-train the brain to use another path.

I think that was when I shifted gears from "fall-apart mode" to "angry mode."  (Angry probably isn't a strong enough word.)  As if being stuck in a hospital and missing the kids' first day of school and Jace's football games wasn't bad enough, now he didn't have the ability to communicate with our kids, or tell them how he feels about them or how proud he is of them.  And that made me livid.  Is it really too much to ask for Jared to have just a tiny shred of dignity and pride??!!  Angry probably isn't a great place to be, but at least I can function in "angry mode."  I wasn't functioning very well in "fall-apart mode."

When I left Wednesday night, I asked if there was anything I could do for him before I left.  He said, "yes."  I asked what he wanted and he didn't say anything.  I said, "Do you know what you want, but can't figure out how to say it?"  He said, "yes," so I spent 15 minutes playing the guessing game and finally figured out that he wanted me to get him a movie.

He headed to rehab on Thursday.  So far I've seen quite a bit of improvement each day.  He seems to be getting around a little better, and his speech is improving.  His answers are getting a little longer.  He still struggles getting out what he wants to say.  Their goal in rehab is to get him using his right arm to where he can dress himself and function without much help, and to be able to convey what he wants.  Rehab is a SLOW process, so we're hoping he stays on track to come home sometime in the next week.  A couple days ago I was really overwhelmed at the thought of him coming home because he seemed really dependent.  Last night when I was with him, I wasn't as overwhelmed, so that should continue to improve over the next few days.

So that's pretty much the past couple weeks in a nutshell.  And believe it or not, I'm sparing many horrible details.

As a little personal side note (probably too personal), I mentioned that we were with Linda a few hours before she passed away five years ago.  While we were there that night, Jared turned on some music so it wasn't so quiet.  A new song came on by Trace Adkins that I hadn't heard before:

"You're gonna miss this
You're gonna want this back
You're gonna wish these days hadn't gone by so fast
These Are Some Good Times
So take a good look around
You may not know it now
But you're gonna miss this"

I remember looking at Jared's dad as I listened to the words, completely heart-broken for him.  I knew that he had been through so much taking care of her, and that he was completely exhausted.  But I knew he would miss all of it.  Ever since that night I have a hard time listening to that song.  I usually turn the radio station if it comes on.  I heard the song on the radio a couple days ago.  As horrible, stressful, and exhausting as all of this has been, I know that someday I will miss this and want it back.  And to be completely honest - that, too, makes me angry.

Pictures taken from Drew and Averie's short visit.  The picture of Jared giving Averie a kiss is one of my favorites.

 

Back Again

Lots to catch up on...  Jared was released from the hospital a couple weeks ago on oxygen.  He didn't need it all the time, just sometimes at night and when he walked a lot.  I started the process of filing Long-Term Disability, which has actually been a big relief for many reasons.  We've been trying to plan a trip to Oregon (Jared has been dying to go back for a couple years now, he's just never had enough time off work), so that will probably happen sometime soon, but I told him he has to have at least a good five-day stretch before we go anywhere!  And so far, there's always been some sort of concern.  I've mentioned that his incision had been concerning me for a while now.  Well, it started to split again last week.  So last Friday I was calling his doctor's office to get him in because I knew it was either that or an ER visit over the weekend.  And sure enough, he was admitted again in the hospital.  We had to wait all weekend for his neurosurgeon to even look at it.   So now we've learned not to ever do anything until Mondays, because it's pointless to sit in a hospital all weekend.  They finally decided on Tuesday that he needed surgery again, which he had yesterday.  But to back up a little, on Sunday when I got to the hospital the Cardio team was talking to him, which I knew couldn't be good.  We found out that his clots in his leg have grown, and they recommended putting a filter in so that the clots wouldn't break off and kill him.  So he had surgery on Monday to place the filter. Yesterday he had another surgery on his head to once again clean out the area and stitch it back up. They told us that they did find some infection again.  They involved the plastic surgery doctors this time to try to get the skin so that it won't pull apart again.  They made the incisions much larger this time so they would have more skin to adjust to relieve the spot that keeps pulling apart.  The plastic surgeon showed me some really graphic pictures that were taken during surgery.  We had also found out a couple weeks ago that Jared's skull at the top has been removed permanently and replaced with titanium mesh.  I could see the the titanium in the pictures I was shown.  Luckily I'm not near as queezy with that stuff as I was two years ago!!  This morning when I got to the hospital, the plastic surgeon was re-wrapping his head so I snuck a couple pictures of his incision.  The resident doctor had wrapped it so tight after surgery that he had a major headache and his eyes are all bruised now.  He's felt horrible all day today.  He's been in a lot of pain and he's been really nauseous.  Here are the new pictures:

 

The kids spent Wed. night at the hospital with their
dad before he went to surgery Thursday.

This was right after surgery.  One of the
doctors got really creative making a
holder for the drain.  (Yes, that's blood.)

The incision now comes all the way across his forehead.

Incision from the back

Black eyes from the
bandage being too tight.

 

I've had a lot if time this week to reflect on our situation, and realized that most of our stress, trials, setbacks, or whatever you want to call them, have been caused by treatment, and not the cancer itself.  Had we left his original tumor untreated, he wouldn't have had the enormous physical setbacks, the infection that led to several months of additional swelling, medications, seizures, additional setbacks with blood clots, dependency on steroids, further physical setbacks, and then obviously everything that has occurred these past few months, which have pretty much been cause for daily struggle.  He could've actually enjoyed his life, rather than this past two years of continuous struggle and setback.  Even had we just radiated the tumor without removing it, his quality of life would've been fantastic in comparison.  But in my time of reflection, I've also recognized that every decision we've made has been with careful thought and prayer, not only from us, but from others on our behalf.

So my conclusion is that there is a purpose for all of this, and the purpose must be to help us to learn.  So I've tried to focus lately on what I've learned.

I've learned that I'm stronger than I had ever imagined.  I've learned that life without health concerns is really pretty darn easy!  I've learned that money isn't important, and that family is very important.  I've learned that when life doesn't go our way, we can kick and scream and complain, or even point fingers and blame, but ultimately that's not the person I want to be, nor is it the example I want to be for my kids.  I've learned that smiling and laughing makes me feel better than the alternative.  I've learned that my life could be SO MUCH WORSE (Spending lots of time in the hospital will do that - you see lots of people with various health problems).  And I've learned what a truly incredible person Jared is.  It makes me sad to watch such a good person suffer.

 

But there's another thing I've learned that I've thought a lot about.  There was a talk given almost a year ago in our church's General Conference.  Elder Rasband (who we like a lot anyway because he was Jared's Mission President) gave a talk about helping others in their time of need.  He said, "If you come upon a person who is drowning, would you ask if they need help - or would it be better to just jump in and save them from the deepening waters?  The offer, while well meaning and often given, 'Let me know if I can help' is really no help at all." 

 

I've thought about that statement a lot lately.  I've realized that there are many who offer, and there are many who just do.  I've always been somebody who just offers help, but I've realized in our situation that the people who "just do" are the difference-makers.  We've been the recipients of so much service, and although I hate feeling dependent on others, or as I call it - "needy," I haven't had a choice.  And through the generosity and service of others, I've learned a lot more about the person I need to be, and that I need to be one of those people that jumps in and saves someone who is drowning,  rather than waiting for the call for help.

Bad Luck

At the doctor's office the other day, the P.A. said, "Geez, how much more are you guys gonna have to go through?!  I can't believe how much you've had to deal with!"  Well, already two days later I can name something else!

 

I guess I need to back up.  This past week actually has been pretty hectic.  The PICC line was removed last Friday, and we were hoping the nurse would remove his staples.  But she said she couldn't because of insurance conflicts.  I didn't understand what could possibly conflict with her quickly removing them while she was already here.  When she came to remove the IV line, she had a supervisor with her.  The supervisor asked why she didn't remove the staples, and she said she couldn't make an extra visit to remove staples, and the supervisor told her, "YOU'RE NOT MAKING AN EXTRA VISIT.  YOU'RE ALREADY HERE!"  But at that point it was too late, they didn't bring a kit to remove staples.  So I decided it was worth it to pay an Instacare co-pay so we wouldn't have to go clear to Salt Lake.  But they wouldn't touch him.  Nobody would.  His Internal Medicine doctor's office said they wouldn't either.  It was a joke.  Nobody wants the liability.  It was Friday evening, so I thought we'd have to wait until Monday.  Luckily our neighbor did it, so we didn't have to worry about it.

 

To add to that stress, I got a phone call the same day from a lady telling me that Jared was kicked off his clinical trial, and she was trying to clear up some insurance stuff to continue with the Avastin.  That news was a pretty big kick in the gut.

 

On Sunday I left to Bear Lake with the kids to Jared's family's Family Reunion.  I could tell Jared was sad he couldn't go, but he felt he needed to work.  When I left he had decided to go to work Monday, then come up Tuesday with his brother so he didn't have to miss the whole thing.  When I called him Monday, he hadn't gone to work that day because he felt too horrible.  He did come to Bear Lake Tuesday, but the day at the beach completely wore him out, so when we headed home Wednesday he told me he couldn't have handled the whole time up there.  We did get him to go for a ride in the boat and jet ski, though.  We rushed back Wednesday to get to his MRI appointment.  Wednesday afternoon I was WIPED OUT!  I had been staying up way too late and getting up way too early at the reunion!  But it was worth it.  I have a hard time going to bed when I know others are up having a good time!

 

Thursday was the appointment with the oncologist.  We found out that there was minimal change in his MRI, but we're both wondering why he's been feeling so horribly lately if there's nothing to explain it.  The past couple weeks he pretty much gets out of bed to eat, but other than that he's completely wiped out.  We also found out Thursday that he wasn't supposed to have his staples out yet.  So I was right, the doctor wanted to leave them in longer, but his dumb discharge papers from the hospital said 10 days!  Oh well, it's too late to worry about that, but I am concerned right now with how the incision looks.

 

We've also decided the past couple days that we've got to have him go on Long-Term Disability.  I had already decided that we didn't have any other option a couple weeks ago, but it took me a while to talk him into it.  He feels like he's throwing in the towel.  But the fact is, he can't work.  He keeps trying and he's killing himself.  It's hard to watch.  So that reality was a huge pill to swallow on top of everything else.  Right now I'm trying to make sure that I cover everything so we don't lose any benefits.  That would be HORRIBLE, to say the least.  But we've both said a thousand times that we can't imagine what our situation would be if he was working in any other job.  It has been a HUGE blessing!

 

So now we're caught up to today.  This morning Jared started saying that his chest was really hurting, and he felt like he was having a heart attack.  I was pretty confident that it could only be one thing - MORE PULMONARY EMBOLISMS!  (Which, by the way, can kill him at any second.)  He really struggled to get his clothes on because he was in so much pain.  Jared's brother, Brian, was already heading over to the house, so he agreed to take him to the E.R.  Sure enough, he was admitted with multiple blood clots in his lungs. 

 

I don't know if we just have the worst luck ever, or if we're just such horrible people that we need a lot of "refining."  Either way, the next few days will be spent in the hospital once again.  I'm at the point where I just try to laugh at how ridiculous all of this is, and I try to focus on one day at a time so I don't go crazy.