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. 

Flu Schmu

This week has pretty much been a bust so far.  Trent started going downhill Friday afternoon.  Of course he tanked hard after the Neulasta shot on Saturday evening.  He wanted to delay getting the shot just a bit because his dad and two nephews were here to visit.  He thought he might make it to church but wasn't able to get out of bed.  Monday morning Jarom woke up feeling a little queasy as did myself and both my parents.  By 10:00 Jarom had puked in the hall at school and was back home with us.  Over the course of the next two days everyone except Zach had a bout with the stomach flu. 

Trent got a double whammy.  Chemo and the stomach flu are not friends and they really ganged up on Trent.  Last night I suggested to Trent that he needed IV fluids.  He was insistent that he did not.  However, as we were talking about it he was vomiting for the umpteenth time that day.  In his mind needing IV fluid meant that he was not able to heal by himself.  I think he saw it as a setback because he has done so well for so long.  I marched myself upstairs to call Katie, all the while hearing Trent begging me to not call her.  Too bad.  This one was my call.  Katie agreed that IV fluids would be a good thing for him so she called in the orders for the Home Health nurse to come over and access Trent's port.  After just one liter of fluid he looked so much better!  We hung one more liter last night to perk him up a little more.  However, by the time he went to bed he was in a significant amount of pain.  We got him all drugged up and I think he had a little better night than he has been having.  He was probably awake a bit with pain but at least he wasn't up to the bathroom a million times. 

I got up this morning and hung another liter of fluid for him.  Hopefully his IV breakfast will help him off to a good day!  Maybe by the weekend we will have our happy, fun-loving Trent back for a few days...maybe!

We left this morning around 6:45 for the scan.  Immediately after I sat in the car I thought I was going to throw up.  Shortly afterward Trent DID throw up.  What a pair we were!  Just a great big ball of nerves!  Trent had his scan at 8:00 and then we waited.  I was pretty calm by then but Trent has been pretty nervous for the last few days.  We finally met with the doctors at 11:45.  Grace came in not showing the thumbs up sign-not good.  She sat down to pull up the scan and started explaining that the larger tumor had shrunk.  I wonder why she referred to it as "the larger tumor".  We only knew about one tumor.  Again, not good.  We learned today that the tumor that was about 6.5 cm x 5.2 cm had shrunk to 3.8 cm x 3.8 cm.  Great news!  We also learned there are three other tumors.  More of the 'not good' news.  Apparently those tumors were on the last scan but were either not seen or never mentioned to us.  Two of the three tumors have more than doubled in size, however, they are very small, only about 5mm. 

So the plan is to continue with two more rounds of chemotherapy and then scan again.  The scan from today will be sent to Dr. Karwande, the surgeon, so he will be kept abreast of the situation.  The thought is to continue to shrink the larger tumor as much as we can to preserve as much of Trent's lung as possible.  The smaller tumors are not a problem surgically and can be easily removed.  The problem is that they are obviously not responding to the chemotherapy.  Hopefully that problem will be solved with some radiation after surgery. 

The feeling we were getting from the docs was really neutral-neither good nor bad.  I finally said, "Hey, this is a positive thing right?!"  We HAVE to keep up the positive attitude!  It is a minor setback but it does not change our outcome.  We have to fight so hard for every small victory.  Thankfully Trent has A LOT of FIGHT!  He has been feeling amazing and his labs prove it.  When I looked at his lab results today they looked better than most healthy people's labs would be!  Katie even said that they would not draw labs during the course of the next two rounds because the labs have been rock solid.  That has to be good! 

We ran into Shea, a friend who also has cancer, and she is doing great!  She looked so good and her attitude is amazing.  That was so good for me to see.  I worry so much about all the friends we have made that are fighting this ugly battle.  It seems like there is way more bad news than good news.

Overall we are encouraged by the news today.  We still have options.  Trent has lost more tumor mass than he gained.  There are people who survive cancer...and we are going to do everything in our power to make sure that Trent is one of those people!

"Mo" Waiting!

The last week has not been too bad.  We were totally geared up for a horrible round 16 and it only turned out to be somewhat horrible.  After all the anger dissapated Trent was back to his usual jovial self.  What a welcome relief!  Each day Trent has gotten better and better.  Yesterday he was singing and dancing while we were all getting ready for church.  He kept yelling that he felt so good.  It was so fun to see him like that!  I giggled all day about it. 

Trent has started to gain back a bunch of the muscle mass that he lost.  He has been flexing his "guns" and wanting me to feel them.  His forearms look/feel like they used to, minus a little hair. :) 

He also got the most GARGANTUAN cold sore on his upper lip this week.  It was so swollen!  I could hardly look at him without laughing.  He looked just like "Mo" on the Simpsons.  Hilarious!  I am sure he did not think it was that funny though.  He pretty much lived on Otterpops to bring down the swelling.  I happened to mention it to Grace and she had me start him on Acyclovir.  That seemed to take the punch out of it but he still has a giant scab. 

He told me last night that he can still feel the tumor in his lung.  Not great to hear but it doesn't seem to bother him like it did before so that has to be a good sign.  We are getting anxious for the scan on Wednesday.  It is a big one for us.  I spent some time this afternoon looking for clinical trials that he could possibly qualify for if he needs to.  I used to have the idea in my head that a clinical trial was a death sentence, a last ditch effort.  Well, it is a last ditch effort but the results seem to be way better than a death sentence.  As I was looking through all the clinical trials many of them required the tumor to be non-resectable.  That actually made me feel good because the last thing we heard was that Dr. Karwande was confident he could remove the tumor again, despite the size.  Usually researching on the internet is a no-no for me but this time it made me feel pretty good about our chances. 

We are looking forward to the next step with great optimism.  We will again be fasting on Wednesday, so if anyone would like to join us and add your prayers to ours we would love it!  Crossing our fingers for awesome news....

Effects of Round 16

So far Trent has not been nearly as sick as he was last round.  He has felt crappy, tired, and experienced some terrible pain but the nausea and diahrrea have not been a big problem this time.  What is really kicking us this time is the anger.  The chemo makes him hyper sensitive to his emotions and he always has a couple of days of being really weepy and depressed.  He talks about what I should do with the kids when he is gone and so forth.  At first that really bugged me but I have come to know that is it just part of chemo.  I don't let it bother me like I did before.  After the weepy comes the anger.  Trent is bugged by just about everything and he gets to mad!  We talked to the docs about this last time and they confirmed it is a definite side effect of the chemo.  I knew that already.  I had researched the drugs and I know that is not how Trent is.  It shocked me the first few times it happened but now I just try to be the buffer between Trent and anyone else who might catch his wrath.  Only a few more days and hopefully it will all pass.

As bad as cancer is, we continue to be so blessed.  The past few weeks I have had a hard time.  I am in some sort of rut and I am working hard to get out of it but it is so difficult.  Over and over I have seen and felt the Lord reminding me that He is there.  Friends stop by out of the blue, packages arrive from friends and strangers, family members do some pretty amazing things for us, etc.  I know all of these people are little instruments in the Lord's hands being used to keep us going.  It is very overwhelming to be the recipients of so many acts of kindness and love.  Our race is not done and we have a long way to go.  Every little bit of encouragement helps us so much.  So to all of our amazing support system, a huge THANK YOU goes out to each of you!  We truly could not do this alone, it would be way too much to handle.  We will see this through and be better people for it.  I might end up in the looney bin but at least I will know we are loved!  :)