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. 

Meds, Meds, and more Meds!

Jared got home from the hospital Thursday evening.  That night a nurse came to show us the drill with the new antibiotics.  He has a mid-line, which is still an IV, but this one only goes to his shoulder rather than all the way to his heart.  She was trying to show me what to do (which came back really quick - I just never thought I'd have to do it again!), but we couldn't get the saline to go through the IV.  She acted like she had never had that happen.  Finally Jared pushed it really hard and it went through, but a few minutes later we noticed that his arm was bleeding where the IV was going in.  It was about 10pm and I was not wanting to go back to the hospital!!!  She luckily got everything under control (we think), but it took forever for her to get a complete list of Jared's medications, so she left around 11pm.  I've calculated the pills, and he's now taking 27 oral pills, 2 stomach shots, and 3 IV injections every day.  The IV bag has to be given every 8 hours, and it finishes after 2 hours, so we have to wake up twice at night, once to plug in the antibiotics, and another time to unplug the antibiotics and clean out his IV.  Luckily we only have to do this for a week.

 

This is a new shot of Jared's head:

 

 

 

This is the first time he's had metal staples.  I could've sworn they told me they'd be in for four weeks, but that doesn't make any sense.  By that point the skin would heal up and they wouldn't be able to remove them, so I'm not sure.  His incision line is different.  It used to go straight back, straight across, and straight back again.  Now it's more of an "S" shape.  And I'm really wondering what the random slice is on the top right corner of the picture.  It looks like the doctor just accidentally sliced his head with the scalpel!  I guess it's not a big deal, but I'm trying to figure out why they wouldn't stitch it up?  Hopefully it doesn't pull apart!  Overall, I think everything looks okay. 

 

I received a card in the mail a few days ago announcing the retirement of the neurosurgeon that performed the surgery two months ago, the one that placed the acrylic piece in his head, the one that was blowing him off a couple weeks ago.  I think that's pretty, um... interesting.

 

Jared has pretty much been flat on his back since he got home from the hospital.  He insisted that he was going to work yesterday.  I told him I didn't think it was a good idea, since he hadn't even sat up for 10 days, but he went anyway.  His brother took him at about 7:30am and I told him I would be waiting for the call to pick him up.  He called me around 2:30, but he was completely out of it when he called.  I asked where he was, and he couldn't get more than two words out to explain it, so I told him to email me the address.  He said he had a minor seizure at work, which is what made him so incoherent.  We've got to sit down and figure out a work plan.  I really think he needs to file FMLA and just work as he can.  He is obviously doing more than he can handle right now!

 

We have another MRI next week.  I'm a little nervous for this one.  He hasn't had an MRI in two months.  And the last MRI was pre-Avastin.  This one should give an indication on whether the Avastin is working or not.  He is going to miss another dose on Friday because of this infection.  I try not to think about it much.  So I probably won't have much to say until then...

 

 

Success (We Hope)

Before I begin, I will give fair warning that I am posting graphic pictures this post.  So don't read if you can't handle it!

 

We've spent a long, boring few days in the hospital.  I'm used to being with someone that doesn't feel good at the hospital, not someone that feels fine.  Each day we got to break away for just a few minutes, but we had to haul along the huge IV pole with antibiotics and everyone stared at us, especially when it started beeping.  So we kept our little outings short.  Luckily he has had a pretty view from his room, and we've been able to watch the life-flight helicopters come in and go out while watching a LOT of TV and movies.  We also had a doctor for a couple days that looked like he was about 24, and he was from Seattle.  So I asked him about my show, Grey's Anatomy (because it takes place in Seattle), and was quite disappointed to learn that most of that show is not real at all.  It's completely dramatized!  Imagine that!  But it was still disappointing.  Here I thought I was learning a lot about medicine!  Anyway, I think he considered us fun patients.  At least we're good for something around there!

 

Surgery was today at about noon.  We heard so many different things all weekend that we didn't know what to expect.... that they were removing the plate and replacing it, that they were leaving the plate in and just cleaning the area really good, that surgery would be 30 minutes...  Anyway, surgery lasted about 3 1/2 hours, they "chiseled out" the old plate (doctor's words) and replaced it with a new one.  The new one has titanium, but I'm not sure if it's attached to the acrylic piece or not.  He said he had to pull the skin pretty tight and use heavy-duty staples that need to be left in for about 4 weeks.  They acted like they need to watch everything carefully.  Luckily they said it was not in the brain, so they expect a mild recovery.  The bad news is that they said he has to have a PICC line again, but they think it will only be for 7-10 days.  We can handle that, we're just worried it's going to turn out to be 8 weeks like before!  The doctor said that the new plate has antibiotics and should do the trick.  But they did say he's at a higher risk of infection from surgery.  I think we already figured that one out!  I just can't believe his head is re-opened AGAIN.  He was healing up so good this last time.  In fact, he had some girls at Costa Vida ask him about two weeks ago what type of surgery he had and when, and they were shocked when he said 2 months ago.  Hopefully this one will heal up as well as the last one, but I'm not sure how the doctor was able to pull the skin shut where Jared had a huge gaping hole.  It could be interesting.

 

 

 

When I left him, he was still pretty drugged up.  We were hoping he could come home tomorrow, but I don't think that's going to happen.  Luckily he's not in the NICU (Intensive Care), he went straight to the NACU (Acute Care).  That's a first. 

 

The kids are coming home tomorrow.  It's been weird to come home at night to an empty house.  I don't think I've been completely alone at night since I got married.

 

To share a quick story - Jared's anesthesiologist today was a guy from Scotland.  He checked Jared's wrist band to make sure he had the right guy.  Jared joked that it would be hard to fake it, and I said that someone would have to fake the scar, too, by cutting their head up.  He said, "You'd be REALLY surprised at the stuff we see in here."  In other words, it wasn't too far-fetched.  He said just last week they had a prisoner come in that had completely cut himself up, probably trying to get out of the prison for a couple days.

 

Anyway, it's amazing at how quickly this infection turned ugly.  But again, we're just glad it wasn't in the brain.  Here are the pictures of the one-week progression:  The last one looks disgusting, but at least the pus had completely cleared out.  I'm not sure if that's his skull or the acrylic piece.  It's probably the piece.

 

 

Deja Vu

...in more ways than one.

 

Jace got baptized last Saturday.  That morning it occurred to me that Jace's big day should go more smoothly than Brynlee's had. (We ended up in the ER the afternoon that Brynlee got baptized.)  That thought pretty much immediately got shot down.  Jared had fluid oozing out of his incision and had me look at it.  As I wiped the pus away, I could see a big gaping hole in his incision.  We knew that couldn't be good.  At that point I was pretty sure we would be headed somewhere after the baptism - I was hoping the Instacare could handle it. 

 

My two handsome guys!

 

 

Jace did have a nice day, and it wasn't as dramatic as Brynlee's turned out to be.  We were planning on going to dinner with Jared's family that night anyway, so our date night was just spent at the ER instead.  The doctor at the ER didn't even touch Jared's head at all.  He basically looked at it and said he was going to prescribe some antibiotics that would hopefully clear it up.  He thought that it was an infected stitch and told us that we needed to go see Jared's neurosurgeon if it didn't clear up in a couple days.  If you remember, we've heard the words "infected stitch" before.  They were wrong last time, too!!

 

I was a little nervous about the whole thing because I was heading out of town with the kids Monday for a Family Reunion.  Jared had to stay home to work (he had taken off 7 weeks recovering from surgery and had more than exhausted his time off).  I should probably add here that it seems like everyone else I know that gets cancer lives it up by going on vacation after vacation.  I've never understood that.  Apparently we're the only ones who have to worry about finances and the responsibility of a job?  Anyway, I felt guilty leaving him to work while we all had fun, but I'm trying to keep the kids' lives as normal as possible, and this is a vacation they've been excited for.

 

When I left Monday the infection didn't look any better.  On Tuesday he texted me a picture of his head, and I told him he really needed to go see his neurosurgeon.  I thought about posting the picture he sent me but it's probably too disgusting.  So Wednesday he stayed home from work, called his neurosurgeon ALL day without returned phone calls.  He finally heard from the nurse late in the afternoon, and she basically told him that the neurosurgeon wasn't in that day, and that there wasn't anything he could do.  At that point my sisters were both insistent that he HAD to do something, and we told him to go to the ER.  He called his dad to take him, and when they got half way there, the nurse called back and told him that the doctors were very much aware of his situation, that he was scheduled for a "clean up" surgery on Tuesday, and not to worry about it.  So they turned around and headed home.  I didn't know what to think when I heard they were putting him off until Tuesday.  I figured they were probably dropping the ball!  Either way, I was mad they weren't seeing him.

 

Thursday the nurse called again and changed her story.  She told him to get to the ER.  So he went to the ER, and NINE HOURS later he was admitted.  So he didn't get admitted until Thursday night.  Friday morning I came home to be with him and sent the kids to stay with my parents for the weekend.

 

At this point they have him on heavy antibiotics until the culture comes back.  It takes 48 hrs to get those back, which means if they had done their job last week in the ER, we would've had the culture back 5 days ago and we could press forward.  But now we have to wait until Monday before they do surgery.  So he has to sit in the hospital bored to death until Monday.  At this point they think it's the acrylic plate that got infected.  They did a CT scan, so they don't think it's in his brain, they think it's just on the surface.  So the plan is to let the antibiotics clean up the area for a couple days, then Monday he has to have a surgery to open up the incision, remove the plate and clean up the area, and replace the plate with a different one that is more breathable.  If they go in and realize it's worse, the surgery will be more invasive.  We're REALLY hoping it isn't in the brain!!!  We've already dealt with that before, and it was awful!!! 

 

So here we are, once again 9 weeks post-craniotomy surgery, dealing with another infection.  And I believe this will make six surgeries in less than two years.  To top it off, he was supposed to have another Avastin treatment yesterday, but they can't give it if he has an infection.  So his clinical trial stuff has been put on hold as well.  Just writing this last part is making me sick to my stomach.

 

This blog was meant to be an up-lifting, positive experience for me as well as those who read it.  I feel like I never have any good news to report anymore!  It's depressing, but I guess it shows the real picture of what people with cancer deal with. 

Catch-up Time

So much to catch up on, I don't know where to begin..

 

I guess I'll start with Brynlee.  Some of our friends nominated Brynlee to be a "Forever Princess" at a Princess Festival at Thanksgiving Point.  She was very honored and excited!  I would definitely concur that she is worthy of the title.  She has been a huge help this past couple years and I don't know what I'd do without her!  The Princess Festival definitely made her feel like a princess for the day!

 

 

Now moving on to Jared.  About 3-4 weeks ago I realized that Jared's sense of humor hadn't returned since the surgery.  I casually mentioned it to him, and he agreed.  It's not like he's a different person (which is why it took me a while to notice), but he seemed a lot more serious and almost TOO polite.  I guess that's not bad, it's just different than what I'm used to. :)  We had a get-together with some of our college friends a couple weeks ago, so I told him he had a few days to get his sense of humor back before we met up with our friends, which we both laughed about.

 

Love these guys!  We are so lucky to have made
life-long friends while attending school.

Well, his sense of humor is returning, slowly but surely.  A couple nights ago he asked me where the toenail clippers were.  I got them for him, and the next morning I found his little pile of toenails - they were the longest things I've ever seen!!  So bad that I made Brynlee throw them away.  I texted him and told him I had found his collection of toenails, and that IT WAS DISGUSTING!!!  He responded, "That was meant to be a gift."  The old Jared is back!

 

Jared returned back to work a couple weeks ago.  Today now completes his third week back.  His first day he went to the office and made it about 5 hours, which was pretty good for him.  The rest of the week they allowed him to work from home, which was nice.  He had a really hard time sitting up for long periods of time.  He kept getting headaches and had to go lay down.  He was scheduled the following week to work in Park City, which is about 45 minutes away.  I told him I didn't think it was a good idea and told him to try to get re-assigned to somewhere closer.  He said that a co-worker was going to take him and bring him home (which was WAY out of the way for the co-worker), but I was worried that he wasn't going to make it for such long days.  But he was determined.  The first day he came home with blood on his shirt.  He had blacked out as he stood up for lunch, and his hand was gripping something, so it basically ripped his finger on the way down.  He said he thinks he was out for a couple minutes.  The next day he blacked out again, this time not as bad, and he just fell to his knees.  The third day he called me about the time I expected him home and told me that he was at a Wendy's waiting for his ride to the REAL soccer game (the professional team here).  I was NOT okay with it!  He had just put in an exhausting day at work, but he said that he had already committed to go, and that he was going.  I was really worried about him blacking out at the stadium!  I honestly thought I would get a call that night to rush to the ER.  But he did it.  He left at 8am and got home at about 10pm.  So he's been putting in LONG, hard days.  He struggles every day.  I hate sending him to work because I know he's having a hard time, but he's determined.  I'm certainly grateful for his sacrifice on our family's behalf.

 

So we're hanging in there, taking it one day at a time.  We won't have any real news until the end of July when we get the results from another MRI.  We are just grateful right now that he is tolerating the treatments okay.

Annoyed!

Jared had his second treatment today.  We were told that this treatment would take an hour.  With the kids being out for summer, I figured we would all go and just drop him off, then go find a McDonalds or something with a play area to kill time.  I figured an hour couldn't be too bad.  We got the kids up at 7:45 and headed out at 8:15.  He got to his appointment at 9:00, and we found a McDonalds.  At about 10:00, I texted him to see what the plan was.  He hadn't even started getting the Avastin yet.  I thought he was kidding.  The kids were already sick of the play area.  So I got gas, cleaned the windows REALLY good to take up more time, and at 10:30 they STILL hadn't started.  So I rented a movie at Redbox and drove back to Huntsman Cancer Institute and parked in the parking garage.  I figured the kids could just watch the movie.  Averie started crying after we parked.  At 11:00, 2 HOURS later, they still hadn't started.  So I decided to take Averie with me and go and find out the problem.  I left the other kids in the car to watch the movie.  When I got to the Infusion check-in desk, they told me I couldn't go back because kids under 12 weren't allowed back there.  So I told them I had been waiting for two hours with four kids and wanted to know why the infusion hadn't started.  They said the pharmacy still hadn't given them the medicine.  (The pharmacy that is located ONE FLOOR below them!)  I was about to go and push the pharmacy along, but realized I needed to get back to the car.  I was worried DCFS would be waiting for me!

 

At 11:45 I got a text that they had started the infusion.  For those of you who aren't good at math, that is 2 HOURS and 45 MINUTES of pure waiting to get the treatment we knew would take an additional hour!!!  So I got the kids out of the car and took them all inside Huntsman to go to the bathroom and look out the windows of the entire Salt Lake Valley.  By this point they were all worn out and fighting and causing problems.  And everyone in the building was staring at us.  So we got back in the car and I decided to drive around since Averie didn't like just sitting and watching a movie.  I found a little park right across the street from the U of U Frat Houses, so I stopped to let the kids out.  A lady came up and told me that they give free lunches to kids at the park until 1:00pm, so my kids got a little sack lunch and thought it was great!  So finally when I had the kids completely content, he texted and told me he was done.  It was 12:45pm.  By the time I picked him up and drove home it was 2:00pm.  Six hours of torture for a one-hour infusion. 

 

And to top it off, his lab work came back showing his calcium was too low, so he doesn't get to start his Vorinostat today.  We have to go BACK to Hunstman Monday to get more labs, and if they're okay he can start a partial dose.

 

Sometimes I wonder how much more of this I can handle!  Obviously if it works, it will all be worth it.

the REAL Jared

Sometimes I get sick of writing about stupid cancer.  So today I thought it would be fun for a change to tell some of my favorite stories about Jared.

 

Jared is such a funny person!  But he's not loud and obnoxious, he's actually pretty quiet and reserved.  But I hear the same thing over and over from everyone that knows him...  He's one of the funniest people they've ever met! 

 

He's also really bright.  He's one of those people that knows a lot about a lot.  He also has a great ability to reason through problems to figure out the right answer.  When we were first married and both in college, we were both getting a degree in business, but I was ahead of him in school.  So I had already taken many of the classes that he was taking.  And because I had taken them, I knew how hard they were and it would stress me out that he would leave all of his studying until last minute!!!  I would always tell him that I had taken the class, that it wasn't one of those classes you can cram the studying in last minute, but he would anyway.  And he would ALWAYS pull a higher grade than I did!  Some of the classes he would take online, so he wouldn't do anything at all until a couple days before the semester was ending.  Even the most flunked classes in the business department, he would cram everything last second and still pull out an A- or B+. 

 

As I said before, Jared is pretty quiet and reserved.  When we got married, his sister would always ask me if my family knew the REAL Jared.  For the first couple years, the answer was no.  It took a couple years for him to warm up and start showing his true personality around them.

 

So what is his true personality?  I will share a couple of my favorite stories.

 

Jared got through college working at a place called Convergys.  It was an inbound call center, and the workers would answer phone calls from angry Sprint cell phone customers.  Most people (myself included) only lasted a couple months.  It was miserable work!  But Jared didn't mind it.  In fact, he always told me the angrier the customer, the better.  He had figured out whether his calls were being monitored or not.  So he usually had fun with it.  For example, he told me a lady called in and told him she was mad her phone was turned off, and that she "wanted something did about it!"  He replied, "Ma'am, you mean you want something DONE about it?"  She would say, "That's right!!  I want something DID about it!"  He would correct her again by saying, "You mean you want something DONE about it."  She never caught on.

 

But my favorite phone conversation that he told me about was a guy who was so mad that he told Jared if he didn't get the cell phone turned back on immediately, he would take the phone and shove it up his A$%!!!  And Jared calmly replied, "Well, sir, I'm pretty sure that would void out your warranty!"

 

The next story is another college experience.  In the winters, the Utah State campus would get icy.  Especially right outside the business building.  He had stuffed his pockets one morning with Starburst to eat during class.  He walked over an ice patch, and his feet flew up and he fell hard.  (And I should add that he's 6'6" so it's a LONG fall for him!)  He said that the Starburst flew everywhere, and that the people around him started scrambling to pick up the Starburst to hand to him.  He said he was humiliated!
 

This next story is probably my favorite of all of them.  And once again, it was while we were in college.  We had won a dinner with an older couple at a church activity we had attended.  (Weird prize, I know.  And I can't say either of us were real excited to go.)  A couple days later Jared told me that the lady had called and asked if there was anything either of us couldn't eat, and he panicked and told her that I was allergic to seafood, because he HATES seafood.  I didn't think much of it, because usually when you tell someone not to make seafood, they drop the issue altogether and make something completely different.  But the lady called me a few days later, and told me she was aware that I was allergic to seafood, but she wondered about fish.  I was trying not to make her feel bad, so I told her fish was fine.  Jared overheard me and started waving his arms and whispering "No!  Not fish!!!  Tell her no!"  So I said that some fish was fine, but others upset my stomach.  So she asked, "What about salmon?"  I told her salmon was fine.  I actually hate salmon, but again, I didn't want her to feel bad.  When I got off the phone, Jared was furious that I had agreed to salmon.  I told him he was just going to have to choke it down.  So we were both DREADING the dinner party.  When we showed up, they had us come to the table, and for the appetizer she had prepared SHRIMP CHOWDER!!!  And because I was "allergic" to it, I didn't have to eat it.  That was probably the hardest I've ever had to hold in my laughter, watching Jared choke down not only his salmon, but his shrimp chowder!  When we got home I called my sister to tell her what had happened, and I was laughing so hard I couldn't get the story out!

 

Every year my family goes to Bear Lake for a few days for a Family Reunion.  The guys usually go golfing so much that it starts to make all the wives mad.  The year that my sister got divorced, the guys half-jokingly had a "moment of silence" on the golf course for her ex-husband.  When they were done golfing, my brothers were trying to extend it another 9 holes and Jared told them that if he golfed another 9 holes, they would be having a "moment of silence" for him the following year!

Golfing at Bear Lake 2009

 

This next story is one that I had to get the "okay" to tell.  But again, it was so funny that I was crying laughing when he told me.  Jared's chemo would make him really constipated.  So he would sometimes go a few days and get really "plugged up."  A few months ago, he had gotten off of his chemo, and he was working when his body was ready to "unplug."  So he went into the bathroom, and his favorite, big stall was taken, so he wanted to wait for it to be open.  But when he got back to his desk, he realized he didn't have much time, so he rushed back to the bathroom and had to use the smaller stall.  He told me that basically five days worth came out at once, and it didn't smell great!  A couple of his co-workers opened the bathroom door and both yelled in disgust at the same time and immediately shut the door.  He said he heard one of them say, "Something VERY UNPLEASANT just happened in there!!"  He was paranoid the rest of the day that the smell was lingering on him.