Kicked Out of the Land of N.E.D.

Tuesday we went down to SLC to visit with our new radiation oncologist.  She was nice but seemed very hesitant about Trent's case.  As she was doing her examination she found a third lump on Trent's chest. She then suggested we stop in to see Dr. Carr before we left.  After Dr. Carr looked at the lumps he decided he wasn't going to mess around with just a biopsy and would perform an excisional biopsy on all three lumps.  He also wanted to see everything that was going on inside so he ordered a CT of the chest, abdomen, and pelvis to be done on Wednesday at McKay-Dee Hospital.

On Wednesday morning Trent was given another blessing by my dad and Bro. Baird, who had returned from a mission just the night before.  It was another amazing, very comforting blessing, reaffirming all the previous blessings of health.

We left at about 8:15 am and headed to McKay-Dee for the CT scan.  We were supposed to be in SLC by 10:30 for pre-op.  At 11:00 we finally left McKay-Dee with a disk of our scan.  On the way down we talked a little bit.  I know Trent was a little nervous and I was too.  I said, "Trent, I am at my breaking point, but I will break for you.  I will never stop loving and supporting you."  I am sure he thought, "Great, just what I need now, a crazy wife!"  I told him that if it ever comes to it, the decision to stop treatment would be his.

When we finally arrived at Huntsman we were a mere 1 1/2 hours late.  Nice.  Luckily Dr. Carr was running behind as well and we ended up napping in the pre-op room before he arrived at 2:00 pm.

This was at least the seventh time I have kissed him goodbye on a gurney and sent him in to be cut open.  I hate it and I think we have done that enough times.  While Trent was in surgery I spoke with Angelique, a social worker who works with Dr. Carr.  She was fantastic and it felt really good to unload a few things.  She gave me a few things to work on and then suggested that Trent talk to her as well.  Trent is all for that and I know it would help him.

Pretty soon my phone starting buzzing like crazy.  I ignored it because I assumed it was family wanting information but I had none.  Angelique and I finished talking and I went to the waiting room to wait for Dr. Carr.  When I checked my phone I realized one of those calls was him trying to find me.  Oops.  I texted Dr. Carr and he quickly came out and took me to the consult room.  On the way in Katie, from Dr. Gouw's office, called.  That was a pretty good indication of what I was going to hear from Dr. Carr.

He started with the good news, two of the lumps were actually hematomas.  Finally!  After two and a half years we got a hematoma!  (As you might recall, that was the initial diagnosis of the extremely grotesque tumor on Trent's hip that started this whole mess.)  The third tumor was definitely sarcoma.  He removed everything he could but there is likely going to be positive margins on that tumor.  Then he dropped the bombshell.  The CT scan revealed eight new nodules in the right lung.  They are all pea-sized except one that is about the size of a marble.  I calmly took in that news and we discussed what that would mean for treatment going forward.  It would be very difficult to resect those tumors because Trent only has one lung.  The best way to go at those is systemically, meaning more chemo.  Dr. Gouw is already working on a plan and we will meet with him today.   I asked Dr. Carr if the idea of doing more treatment was ridiculous.  He didn't think so but emphasized that we should focus on getting as many good days as we could out of the remainder of Trent's life.  I started to cry then.  Dr. Carr and I both were worried about how Trent was going to take that news.  Dr. Carr said it was his responsibility to tell him then left to do that.  I sat in that stupid consult room all alone and cried.  We have fought for so long, and so hard!  Where is our break?  How many more options can there be?  I kept remembering the blessings that Trent has been given.  I have complete faith that those will come to pass, I have no idea how, but they will.  Right now I am sort of questioning whether or not I am in denial.  But every time I pray I feel calm and at peace about going forward with treatment.  How I wish I could know the end from the beginning!

When I finally saw Trent he was awake and talking to Dr. Carr.  Trent told me later that before the surgery began he knew about the tumors.  As they wheeled him into the OR he saw the scan pulled up on the screen and could see all the nodules.  He is disappointed, but not defeated.  He wants to talk with Dr. Gouw and see what he has to say.  He is willing to keep fighting but wants some sort of guarantee that his life will not consist of him being in bed all the time, too sick to enjoy his kids.

We left the Huntsman shortly after that and went to the Little America.  We stayed over because we knew we would have appointments the next day and I didn't think Trent wanted to ride in the car for an hour right after surgery.  We both crawled into bed and cried.  We called our kids and told them we didn't get good news and they needed to pray for dad.  That killed me.  I can't imagine what they must have thought, listening to us bawling and telling them how much we love them.  Poor kids!  I wish I could rewind the clock and give them a life without all of this mess.  I wish Jonathan knew what Trent used to be like, before cancer ravaged his body and chemo messed up his mind.  I wish, I wish, I wish...

After a while the tears stopped but we didn't get out of bed.  We just laid there trying to enjoy some peace.  We prayed together and that helped.  At about 9:00 we finally ordered some food.  That was the first either of us had eaten all day.  I got Trent back to bed with a fresh ice pack and some pain meds then went to take a hot bath.  I just sat in there and prayed.  I told Heavenly Father that I had faith in His plan and was leaving it all up to Him.  When I finally came out I was feeling pretty calm about everything.

We were both able to get some pretty good rest until about 6:30 this morning.  I got up to change the oxygen tank and get Trent more pain meds.  After that I couldn't sleep.  I finally got up and locked myself in the bathroom to write this all down and get it out so I can deal with what happened yesterday.  We have been in this position before, where it seemed that all hope was lost, but it is not.  We have hope in the priesthood blessings that Trent has been given, hope in the Lord's plan for us, and hope that Trent will be healed.