What He Doesn't Let You See

Last Thursday as I was leaving the senate hearing, I was walking out with Representative Kevin Parker.  I was there to testify on our Cancer Can’t Charitable Pharmacy bill with Jonathan, the only problem was that Jonathan was in so much pain that he was getting nauseous and was feeling like he may pass out.  Or he had taken so much pain medicine that he was getting those symptoms… Either way, he sat in the truck while I went into the senate hearing alone.  Kevin was reassuring me that I did a good job, because he knew I was a bit nervous.  Jonathan and I planned our testimony together and I simply just had to wing it!  As I was leaving Kevin said to me, “You know Jonathan never really gives me any signs that he is in pain or that he doesn’t feel well.”

As we were driving home that day I started to think about what Kevin said.  My aunt once told me the same thing.  They came to visit and upon leaving Jon says, “I think we need to go to the ER.”  But my aunt and uncle had no idea he was that sick… he just tries so hard to be the normal Jonathan we all know and love.  I sometimes get frustrated with him because he doesn’t tell people the truth about how he is feeling.  A couple weeks ago he had a breakfast date with a friend.  He felt absolutely awful.  He didn’t cancel though, he got out of bed just in time to make it there and then got right back in bed as soon as he got home.  I’m certain he joked and smiled as if he was just feeling peachy!  But I understand why he does it.  When he was very first diagnosed every time we saw someone they gave us the puppy dog look and the pity conversation ensued.  Jonathan often would just rudely walk away.  It wasn’t him.  He didn’t want pity and he certainly didn’t want people to treat him any differently.  Jonathan jokes, he laughs, he serves others, he is active and works hard.  That’s who he is, and who he wants to be… Not that sick guy with cancer.

It is so hard to sit and watch him in pain.  I feel so helpless and we’ve had our own screaming match about me treating him like a patient.  This role of being his wife and caretaker isn’t easy.  He wants his wife, and for me to treat him as I always did.  I think he gets frustrated that he even needs a caretaker and has to even ask for help.  I watched Jonathan’s mom in the midst of this exact struggle this week when we stayed with her.  She could tell he wasn’t feeling well, and she wants to help.  But really what can she do?  So as we sat to watch a movie, she would ask “Do you want a blanket, do you need some water, can I get you a snack, I will make you some tea…”  I think her next offer was to massage his feet and trim his nails!  I finally laughed and teased her about it.  But I know how she feels.  It was just interesting for me to sit and watch it from a different perspective… Every time she said something it was just a reminder he wasn’t feeling well.  She was sweet and helpful before cancer, but not quite like this.  If he can forget for 5 minutes that he has cancer, he doesn’t want someone else to remind him!  He doesn’t want to be treated different.  So he puts on a happy face and doesn’t let anyone know how he really is feeling.

Prime example:  Kevin texted him as we were driving home to check on him.  He was sleeping most of the trip in the back seat trying to fight through the pain.  But when Kevin texted, this was the picture he sent back! 

So the truth, Jonathan feels awful.  The pain is becoming unbearable and he is starting to hide out at home so he doesn’t have to lie about how he is feeling.  It is becoming harder each day to pretend.  We were supposed to be on a plane to Vegas today with Scott and Heidi for another bucket list item.  (He wants to drive an exotic car)  But we didn’t feel like he would be able to sit in an air plane… So Scott and Heidi boarded the plane today without us!  We moved up surgery to Tuesday for Jonathan to have his pain pump put in on that morning.  He just can’t take it anymore.  This is what our mornings consist of now.  He didn’t know I snapped a photo, but he can’t sit because it hurts too bad.  So he Stands to eat at times and tries to fight through the pain.

He is starting to get bouts of nausea randomly through the day.  We aren’t sure why because he has never had a problem with pain pills before.  His heart rate is slowly rising.  He has lost feeling in his left foot.  Yesterday Jonathan had to walk away from the breakfast table because he was beginning to get a bit emotional.  He is just so tired of feeling sick.  I know his mind is probably where mine is.  That tumor is growing… Is there another reason why he is feeling nauseous?  Where else is it spreading to?

We are really hoping that this pain pump will help with his pain and we can get back to a little bit of normal life.  On Thursday he has his next infusion probably right after we leave the hospital.  We will schedule his next scan at that time.  I would guess it will be in the next 3 weeks.  That will have given the Dr. in Houston 6 weeks to grow the next infusion we will try.  We can still hope that this current treatment is working, however we are pretty certain it isn’t.  We can see the tumor growing in his hip, and Jonathan is starting to get chest pain around his sternum.  So at this point we really are praying that the tumor burden hasn’t spread so much that we can’t get into the Houston trial now.  If we happen to get good scan results, we would be very pleasantly surprised. 

Please pray that this pain pump works effectively for Jonathan.  I’ve been having random bouts of crying when I hear a certain song, or when I’m driving by myself.  I guess it just feels like things are getting worse.  BUT we are not giving up.  We are still praying for our miracle and trying to enjoy the minutes we have.  We would just like to have quality minutes back.  Minutes with the Jonathan that isn’t in constant pain.  Thank you all for your thoughts and prayers.  We really appreciate it.