August 23, 2013

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.

August 3, 2013

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.