What a Roller Coaster!

We have really been through some ups and downs this week!  I guess that is the nature of the beast though.  After the news we got on Monday we were gearing up for a trip back east for surgery.  I was a little nervous about being out there alone with Trent.  What if things didn't end well and I was left alone out there to take care of everything?  What if our kids didn't get to see Trent one last time?   If everything went great, how was the 2 1/2 day train ride home going to be?  Ugh.  'What ifs' are a bummer. 

We went to McKay Dee on Wednesday to get the cardiac MRI that the PA doctors wanted.  No cancer in his heart.  They didn't even have to use the contrast for the last half of the MRI because it was so clear that there was no cancer invading the heart.  I am not sure if it is on the pericardium though, I have not read the final report yet. 

Thursday we headed down to Huntsman bright and early to have a PET scan.  As soon as I left Trent at radiology I went down the hall to take care of a couple of things when I got a call from Trent.  I forgot to tell him to fast before the test!  Oh snap!  The girl who set up the appointment told me not to let him eat after midnight and I totally forgot!  Stink!  We had to go home and try again on Friday.  That meant we got to be there for the grand opening of the new wing at Huntsman.  I stood on the third floor and watched out the front windows while they did the whole ceremony.  I had really mixed feelings about it.  Yes, it is nice and beautiful but I did not want to see it.  I had hoped we would be through with treatment by the time it opened. 

Anyway, Trent had his scan done at 8:00 am and we left around 10:30 to get him some food when he was done.  We had just gotten his precious #14 Bootlegger Club from Jimmy Johns when Trent got a call from the Radiology department at Huntsman.  He had to redo the whole scan (which takes two hours) because they had a computer malfunction.  Aack!  Poor guy!  He had just opened his sandwich to eat!  So we headed right back up to start all over.  Thankfully the results were awesome!  No cancer anywhere except the left lung! 

Earlier in the week we heard from Katie who said that Dr. Karwande had received Trent's scan from when he was in the ICU and he said he could do the surgery!  That put a whole new set of options on the table for us.  So after the scans on Friday we headed over to talk to Dr. Karwande.  He had heard the results of the cardiac MRI and we told him the results of the PET scan.  But before he even knew those he was fully confident he could do the surgery.  He made us feel so good about everything.  We kept bringing up worries about what would take place during the surgery and his reaction was, "Why are you worrying about that?  That is my job.  Let me worry about that and you worry about getting better."  He told us that he would notch out each part of the lung that had cancer in it while preserving as much as he could.  I asked him about the cancer possibly coming back again.  He replied, "If it comes back, we will just do another surgery."  I wondered how many times that could happen and he said that he had done surgery six times on one lung before.  At least this is not our last shot.  The doctor from earlier this week made us feel like Trent had one shot and one shot only.  Dr. Karwande does not think that at all.  While it is still very critical that he have surgery right away, we still have options for down the road. 

Dr. Karwande does not think he will have to remove the entire lung but possibly the lower left lobe.  He will make that determination during surgery.  This time Trent will have a thoracotomy, meaning they will go in under his arm and go in between his ribs.  It is a more painful surgery to recover from so we are a little apprehensive about that.  The last surgery was no walk in the park.  I told him we had seen a radiologist for possible treatment and he did not think that was a good idea.  One thing he said was, "Surgery is benign."  I loved the sound of that. If we can get rid of the cancer with surgery that is the best chance for survival.  The tumors will be sent to the lab in Arizona again for molecular testing.  Then, if Dr. Gouw deems it appropriate, we may do a little chemotherapy to make sure everything is gone for good.   We set up a surgery date for Wednesday morning.  That is the day Trent's case was supposed to be discussed in PA.  We decided that we can change the surgery date if we need to but would feel it out over the weekend.  We have been fasting and praying and we are both at peace.  The logistics make more sense and we feel very confident in Dr. Karwande's abilities.  We will be fasting and praying for Dr. Karwande, his surgical support team, and Trent on Wednesday.  It will be another very big day for us to say the least.  After a 5-7 day hospital stay it will take about 6-8 weeks to fully recover from this surgery.  Hopefully we will have Trent feeling pretty good by Christmas! 

Tornado

Yesterday was, well, a tornado.  A whirlwind of new information that threatened to sweep us off our feet.  We are still trying to process it all. 

We met with Dr. Whipple at McKay-Dee hospital yesterday.  He is the radiation doctor we were sent to by Dr. Gouw.  After meeting with him, radiation sounded like a walk in the park compared to what Trent has been through.  He said that when you radiate the lungs the affect is permanent and that he doesn't radiate sarcomas in the lungs very often.  They usually are not super responsive to radiation-meaning they don't just dissolve into nothing like lung cancers do.

Then we headed down to the Huntsman to meet with Dr. Gouw.  First we met with Amy, the social worker to see about trying an antidepressant for Trent.  It is very common for cancer patients to need some stabilizing medication.  I really think Trent is doing very well-all things considered.  It is just that crazy chemo that made him go insane.  We might try an antidepressant for awhile and see if it helps any. 

When we saw Katie she was all excited saying they had something for us.  Dr. Gouw told us that Trent's case had been discussed in the Monday morning sarcoma meeting and he thought that Trent should go right to surgery.  The Hunstman has recently invited a highly trained cardiothoracic surgeon from Philadelphia to join their team.  Dr. Gouw explained again that chemo was not our best option now and we might revisit it in the future if we have to but then it would only be a clinical trial.  All the the mainstream chemotherapy drugs no longer work for Trent. 

Then we met the surgeon.  Dr. Carr sat down and told us a whole crazy amount of information that kind of blew us away.  First, there is no cancer in Trent's right lung.  Yeah!  Second, the cancer in his left lung is pretty ugly and possibly involves the pericardium (we knew that) and the nerve that controls your diaphragm.  Oh.  Okay...Third, he does not have the skills or expertise to take Trent's case.  He believes there is only one person in the world that can perform surgery on Trent and that is Dr. Joseph Freidberg, in Philadelphia.  Wow.  I am sure that Trent and I both had our jaws on the floor at this point.  That is NOT what we were expecting to hear.  He said that if Trent was a 60 year old man no doctor in the world would perform this surgery, but because he is 38 and has five kids who need him, it is worth a shot.  Trent could lose as little as the tumors, or as much as an entire lung.  There are a couple more tests that have to be done first, a cardiac MRI and a PET scan.  Then those results will be sent to Dr. Freidberg and we could be flying to PA as soon as next week. (I am shaking while I am typing all of this because it is still so overwhelming!)  We may be there as long as a month if all goes well.  We are very anxious to hear from Dr. Freidberg in a couple of days. 

We talked a bit more with Dr. Carr and he explained some of the things that might happen.  He said that Trent would never run again.  Whatever.  Dr. Jones also told Trent that he would likely have a significant limp!  I am amazed at how much Trent has been able to do that he was told he would never do.  So, I am very optimistic about what his life would be like after this surgery.   I said to Dr. Carr , "If we do this surgery, we are not looking for an extra six months, or year or two..."  He immediately said, "No.  If we do this surgery, the goal is a CURE."  Oh my how beautiful that sounded!  We have no interest in going through something this big to "prolong life".  Our goal remains the same as always.  CURE. 

Of course, all of these possibilities are dependant on the results of the testing in the next few days so we are trying not to get too freaked out, nervous, or excited.   Until then, we are praying like crazy!  (When has that ever NOT been the case?) Thank you, thank you, thank you, for all the prayers on our behalf!  We are overwhelmed and grateful.  

The Ugly Just Got Uglier

Sunday night was surely a night to remember-or forget.  At about 10:00pm Trent started having some pretty severe chest pains.  I tried to medicate him and get it to go away but it was not letting up.  I called the Huntsman and spoke to the on call physician.  She suggested that I get Trent down to U of U ER.  As we were getting ready to go, Trent had an explosion of pain and his condition worsened dramatically.  I decided to drop everything and get him the BC ER.  I really didn't think he could make it even to McKay Dee. 

We ended up being taken care of by two of my little brother's friends, Gil Hollingsworth and Cory Kaminska (who also happens to be my brother-in-law's nephew.)  Small world.

Anyway, I thought he may have had a pulmonary embolism because he had been coughing up blood for the past couple of weeks.  We had called our nurse Katie, and discussed the problem but she thought it could wait until the next scan.  So when we got to the ER they immediately gave Trent some Dilaudid to relieve the intense pain in his chest.  They monitored his heart and did an xray while they were trying to get him stable enough to transport him to U of U. 

 This picture was obviously taken AFTER the pain meds kicked in.  The xrays did not tell us too much but there was not an obvious blockage so they decided to put him in an ambulance and send him to SLC.  By this time it was about 2 am. 

 This is Trent being loaded up for his first ride in an ambulance.

 Trent was a little disappointed that they did not run the lights and sirens the whole way down to U of U.  They did go pretty fast though.  Luckily there are not too many people on the road in the wee hours of the morning!

I did not ride with him but ran home to gather enough things to stay a couple of days in SLC.  I had to stop to get gas and some 5 hour energy drinks.  I was not sure I would be able to stay awake the whole way down.  The energy drinks really work!  I only drank 1/2 a bottle but it perked me right up!  As I was driving I was pretty calm.  I was praying for reassurance and right at that moment I realized that the song, "I am a Child of God" was playing on my car stereo.  Of course the weeping began then, and the danger became 'not seeing the road', instead of 'falling asleep'. 

Surprisingly I got to the hospital not too long after Trent did.  I thought I was much farther behind him than that.  They immediately began monitoring his heart, did an EKG, put him on oxygen, and the works.  My real fear was the pulmonary embolism and they didn't seem to be actively pursuing that possibility.  A few hours later they had an ultrasound of Trent's legs done to see if he was clotting there.  All was clear on that test.  Then we waited.  And waited.  And waited.  We were the first ones to be in that room at the new ICU and I guess the staff was still not quite used to how to run this new ICU because everything was SO SLOW! 

 Does this look like a guy who needs the ICU?  Everyone kept saying how great he was doing.  Especially since the guy in the next room had just had his last rites and his whole family was coming and going all day.  That was sobering.

We were starting to figure out that the MICU doc had thought he had transferred Trent to Pulmonary to be treated but the word had not been spread so Pulmonary was still waiting-and they did not have a bed for Trent.  We kept asking our nurses when something was going to happen and they, of course, knew nothing. We knew Trent needed an Echocardiogram, AngioCT and a bronchoscopy.  Finally at around 5:00 pm everyone wanted to do their tests all at the same time.  He had the echo and it came back clear. No heart damage.  Then they did the bronchoscopy.  Trent wanted to stay awake for it so they gave him the lowest dose of sedative.  He sucked it up like a sponge.  It didn't even phase him.  They kept giving him more and more Fentanyl and Versed to relax him.  After each dose they would try to do the scope.  I watched the whole thing.  It was pretty gruesome.  Trent was gagging and choking, it was awful.  Finally they pretty much knocked him out and did the scope.  Dr. Boltrax, the ICU dr., promised to take a bunch of pictures for Trent to see.  It was fascinating watching the scope of Trent's lungs.  I kept expecting to see a big ugly tumor but no such luck.  Everything looked pretty good.  They were unable to locate the source of the bleeding though so the scope didn't end up being very helpful.  The worst part about it was that they had been expecting to the scope all day and therefore wouldn't let Trent eat anything.  He had not eaten since Sunday at 2:00 pm and now it was 6:30 pm on Monday.  He was famished!  They said they would get food ordered for him right away.  Finally at 8:00 pm I went to the cafeteria and got a Reuben sandwich to share with him.  As soon as he ate that, his dinner came.  Whatever.

 This is Trent trying to relax after the bronchoscopy.  It was pretty intense for awhile.

The next day we waited forever for the AngioCT.  They finally did that around 1:00 in the afternoon.  We learned that there was no pulmonary embolism but that the largest tumor that had been shrinking, was now mutated and growing rapidly.  Not great.  The other tumors are growing as well and there are more of them.  Also not great.  We waited for a few more hours for someone from oncology to come see us.  The room was freezing and we were both really ready to go home. 

This is Trent trying to stay warm in that freezing room! Ugh!  Why don't they at least make it comfortable there?

Finally Dr. Jones from the Huntsman came to see us.  While he was there the pulmonary doctors came back to say that they wanted Trent to stay for one more night so they could observe him.  He stood right up and said, "Absolutely not.  I will be going home today."  Dr. Jones agreed that it was not necessary for Trent to stay.  The worry is that if Trent coughs up blood again, and it gets worse, he doesn't have much time to get help.  Scary.

Dr. Jones told us what we already knew about the tumors.  He said that "one of our tools was broken". Meaning mainstream chemo does not work for us anymore.  We are going to look into radiation and possibly a clinical trial.  We already have appointments set up for Monday. 

I am not going to lie.  The last couple of days have been VERY hard.  We have cried buckets of tears.  Just when I think I am dry I cry more.  I feel like we are being painted into a corner and our options are getting fewer and less reliable.  But, we do still have options.  And we still have our faith.  Right now that is what I am clinging to the most. 

While we were at the U of U we were visited by a social worker who was concerned about our support group.  She asked me specifically who I turn to.  Trent is always the one I turn to.  I have never been a real "girlfriend" type of girl.  When I need to talk-Trent listens to me.  But her question left me wondering who else I had to lean on.  Within 24 hours I got phone calls from two very good friends who both said they could not stop thinking about me and felt like they should call.  It is very humbling to know how much my Heavenly Father loves me and is waiting at every turn to answer a prayer.  I am in awe.  However humbling that is, I am still a little greedy.  I really need the miracle we have been praying for, and I need it really quick! 

The Good, the Bad, and the Ugly

Chemo stinks, bad.  This type of chemo that Trent is on has been better to him lately, at least in the nausea category.  He hasn't really thrown up and is still able to eat pretty well.  The part that is the worst is the CRAZIES!  Every round by about the fourth day Trent cries a lot, for about two days.  Then the anger sets in...and it all goes downhill really fast after that.  I usually try to position myself as the buffer between Trent and the world at that point.  The buffer doesn't block it all though.  The other day Zach told me how much he hates chemo.  He said, "I know not to go by Dad because he will yell at me for any little thing.  At least when he was sick I could still be around him."  Ugh.  He's right.  All the kids try to steer clear when he is like this but it's almost impossible not to catch his wrath for something.  So we are waiting out the storm...hoping for our happy Dad to come back soon. 

We did have a little miracle earlier this week.  Our son, Zach turned twelve last week and was scheduled to receive the Aaronic priesthood on Sunday.  Unfortunately that is usually a terrible day for Trent in his cycle.   Trent got chemo last Wednesday-Friday and his neulasta shot on Saturday.  Neulasta always hits him really hard within about one hour. We really debated trying to wait on the shot until after church but that would have put him outside the window of the most effectiveness for the shot.  I wanted to wait and do the ordination the next week but Zach was so excited!

I gave Trent the shot on Saturday afternoon and we fasted and prayed that he would feel well long enough to give Zach the priesthood.  That is when our miracle started.  Trent felt pretty good, albeit not great, but pretty good all day Saturday.  Sunday came and he was still doing pretty good.  He came to Sunday School and was looking pretty tired and in pain.  I ran home to get him some oxycodone to help him last a little longer.  During sacrament meeting he seemed to be alright.  Zach bore a sweet little testimony about the importance of the priesthood and how many times he had seen in work for his Dad and how excited he was to receive the priesthood that day.  Dang kid, always makes me cry! 

Trent was able to give Zach the priesthood that day.  That was a major milestone for us.  When Trent was first diagnosed, one of the things that worried him the most was that he would not live to give Zach the priesthood.  I admit, it worried me too.  I had already made a plan in my head for that.  But then I listened to blessing after blessing given to Trent that promised him he would "live to raise his children to maturity" and my mind was put at ease.  We are seeing the realization of those blessings with every milestone our children reach. 

Round Eighteen!

Yesterday marked the beginning of round eighteen.  That sounds awful!  I can hardly believe that we have done this so many times.  Hopefully this is our last...before surgery. 

After we all got over the flu Trent had about one week of feeling pretty good.  We took advantage of that and headed up to Bear Lake for the weekend.  Some friends of our generously offered their cottage for our use and we had a blast!  Zach and Trent got to go to the Priesthood session of General Conference together for the first time.  That was pretty exciting for them both.  We took a bunch of family pictures, played games, watched conference, and made great food.  Jonathan kept walking around saying, "I LOVE our new house Mom!"  Poor, kid.  He has no idea of 'our' home.  Ever since he can remember we have been living with my parents.  It has been wonderful but we are missing having our own home.  Lately that has been difficult for us.  We are ready to move on and be done with this whole mess of cancer.  So, that is why I pray for patience!

Trent is always joking with the nurses and volunteers.  There is a snack cart that goes through all the time and the volunteers offer us goodies.  It is always the same stuff and one day Trent asked the volunteer for something he knew she did not have.  We all laughed about it but about half an hour later she showed up with his request, peanut butter M&Ms.  She had to go out to the vending machine to get them for him!  She even brought him two bags!  The fact that she would do that for him made me tear up a little.  Trent jumped up and gave her a hug while I tried to wipe my tears away before anyone saw that I was crying over M&Ms!  Then yesterday,  while we listened to ABBA-per music request from Trent, he was joking about needing Mrs. Fields cookies on the snack cart.  The nurses all chimed in and laughed about how great that would be. This morning when Debbie brought Trent his "pre-meds" he got quite a suprise.  Not Mrs. Fields cookies but maybe even better....doughnuts!  Kean, yesterday's nurse, had tuned into his little joke about needing cookies on the snack cart and sent over doughnuts for his snacking pleasure.  We really love the nurses here.  They always go out of their way to make this whole experience a little easier to handle.    



Debbie and Kean hand feeding Trent his "pre-meds".

When we came down on Wednesday I had a couple of errands to run while Trent got his infusion.  As I was driving I was listening to my favorite talk on cd, yep, you guessed it, "The Fourth Watch" by S. Michael Wilcox.  I have written about this talk before, but I LOVE IT!  Everytime I listen something else jumps out at me and since I can't read my scriptures while I drive it is great to listen to talks about them.  This time I was listening to Bro. Wilcox talk about a time when Jesus' disciples were rowing on the stormy and turbulent sea.  They had rowed about 6500 yards and had stuggled greatly the whole time against the wind and waves.  From the shore, on a hill aboe the sea, Jesus watched.  He watched them for quite awhile, struggling and straining to fight through the storm.  They never left His sight and He knew exactly how they were struggling.  Finally, He went to them and calmed the storm.  As I listened, I felt a warmth surge through my whole body and make my fingertips tingle.  I KNOW we have been watched.  We have not been left to struggle through the storm alone.  We have had so much help along the way and our storm has been calmed repeatedly.  I sometimes think that the calming of our big storm will be as dramatic as when Christ calmed the sea for his disciples.  That, He will eradicate Trent's cancer and it will all be over.  But in reality, He calms the storm daily.  The steady peace and support we have been given, the answers to prayer, the engulfing warmth and tingly fingertips are evidence everyday that we are being watched.