Feed your FAITH and your fears will starve .

Monday, July 30, 2012

Another Bombshell...

Wow.  Mondays stink.  I was fired from my job this morning.  Not such a great way to start the week.  But, on the bright side, I will have the free time I have been wanting! Now the job hunt begins.  Hopefully the insurance won't be too sticky of a situation.  Ugh.  Trent is pretty worried.  I am concerned but optimistic.  When a door closes, a window opens, right?

Trent has been taking the new chemo pills for five days now.  We have been watching closely for any side effects.  It is hard to tell what is what though.  He was sick before he started the pills and I don't think he is any more sick.  He has had a headache a couple of days and I think that might be from the meds but I am not ready to say that definitely yet.

The past week has been rough on Trent.  Besides feeling sick, he is worn down mentally and emotionally.  It is just all so much to deal with.  We have both wondered a little if we are in denial, if we are correctly understanding the priesthood blessings that Trent has been given. Yesterday in church I was sitting alone in Sunday School listening to the lesson being presented by our Bishop.  He was talking about temples.  He asked us to turn to a scripture in D&C.  At the time he said the scripture I was trying to remember the password for the wi-fi in the building and didn't really hear what he said.  I thought he said D&C 13 so I went there and there is only one verse, so I thought maybe he said D&C 31.  When I got there my eyes immediately went to verse 13 for some reason and this is what I found:

"13 Be afaithful unto the bend, and lo, I am cwith you. These words are not of man nor of men, but of me, even Jesus Christ, your Redeemer, by the dwill of the Father. Amen."

In that moment I knew that Heavenly Father was reaching out to me personally. It wasn't earth shaking as I would hope, but a warm, peaceful feeling settled over me and calmed my heart.  What an amazing experience!  I have heard many times of people being led to answers when their scriptures fall open to a certain page.  It has even happened to me before, but not like this.  There is absolutely no doubt in my mind that I have a loving Heavenly Father who is acutely aware of our situation, our worries, and our fears.  He also knows of my devotion to Him and that I will be faithful to the end.  No matter what we are asked to face, or how hard the road gets, my faith will not waiver.  I might need a little reminder now and then, but I know He will be there to give it to me.

Thursday, July 26, 2012

The Pills Have Arrived

The new chemotherapy pills have arrived....and they are the exact shade of blue I saw in my mind.  Totally different shape, but the exact shade of blue. :)  Cross your fingers for little to no side effects and success!

Tuesday, July 24, 2012

Waiting is Not So Fun

We are still waiting for the new medicine to arrive.  Trent is feeling more pain, especially in his right chest and that has thrown him for a loop.  He is anxious, irritable, and overall feeling lousy.  I don't know exactly what to do for him.  He keeps asking me 'why' and I have no answer.  I wish I could say, "Oh it's because....(blah, blah, blah) but it is going to be fine because...(blah, blah, blah).  It is part of the plan.  But what is the plan?  I wish I knew!  I am very good at following directions to obtain the desired end result.  I am sure I am one of the few people on earth that actually reads the instructions for everything.  But we are so in the dark right now.  Just lay out the whole plan so we can see where the twists and turns are, how long we will be in perilous circumstances, and how it will all turn out.  I can follow that.

I keep telling Trent that we are learning patience.  He doesn't like to hear that and I don't like it either.  But maybe the bigger lesson right now is learning to trust.  When this dawned on me the first thing I thought of was this:

"Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy paths." Proverbs 3:5-6  

But, reading on I found this in verses 11-12, "My son, despise not the chastening of the Lord; neither be weary of his correction: For whom the Lord loveth he correcteth; even as a father the son in whom he delighteth."

It's good to know we are loved. :)

Friday, July 20, 2012

Change of Plans...AGAIN

Trent and I visited the radiation oncologist, Dr. Kokeny, on Thursday.  She told us that she, along with the other doctors, did not think that radiation was a good option for us at this time.  After all they learned about Trent on Wednesday, they all agreed that he needed a systemic treatment and that radiation would possibly be used sometime in the future if a tumor became large enough to be symptomatic.  After talking with her for a while, Trent and I agreed.  We then headed upstairs to see Dr. Gouw.

I was a little apprehensive about what we would hear from Dr. Gouw, but even more curious.  Dr. Gouw is amazing and I know he is doing his best for Trent.  He told us about a new drug that has only been on the market for three months and is FDA approved.  It is called Pazopanib.  It is not traditional chemotherapy that is cytotoxic, meaning it kills cells.  It is a targeted inhibitor, meaning it prevents an action in a chain of events, hopefully slowing or stopping the growth of the cell.  The good thing about it is that it only goes after cancer cells.  Trent's bone marrow, hair, and gastric system will be spared the horrible side effects of traditional chemotherapy.  They are seeing good results with this drug against sarcoma.  The delivery is four oral pills each day, indefinitely.  If it works, Trent could live on this drug the rest of his life.  The side effects are minimal, he may have an upset stomach and fatigue.  Of course there is the mile long list of possible side effects that every drug has, but those are not likely to happen.

Dr. Gouw also discussed putting Trent on a Phase I clinical trial drug called Lapatinib.  It is a new breast cancer drug that may improve the effectiveness of Pazopanib.  We are going to start the first drug and possibly add in the second drug down the road a little bit.  Our insurance company will only pay for Pazopanib if it is done through mail order so it will be about a week before he can start it.  We will check his labs one week after he starts the medication, see Dr. Gouw two weeks after, then scan again in two months.

Dr. Gouw also told us that there is a possibility of doing an ablation down the road if needed.  For example, if the tumors in Trent's lungs were to respond well and maybe just one or two remained, they could insert a needle into Trent's lung and cauterize the tumor(s).  We could also be put on any number of a handful of different clinical trials if need be.  It was good to hear that at least we still had a few options.  Dr. Gouw said he was sure we would go forth with our good attitude and we would all hope for the best.

When we left, Trent was trying to process everything he heard.  I asked him if he would be okay with never getting rid of cancer, just managing it for the rest of his life.  He was a little bugged by that thought.  It doesn't really give closure to anything and in his mind, he is still existing between to worlds, not dead but not healthy.
I am anxious to see how he responds to this drug and what the side effects do to him.  We are very hopeful Pazopanib will work and give Trent the quality of life that he needs.  

After I wrote the last post I got all the tears out and tried to put on my happy face.  I was feeling excited to hear what the doctors had come up with for Trent.  I kept having this thought that the chemo would be in pill form and that Trent would have little to no side effects.  In  my mind I saw myself dumping little blue pills into Trent's pill box.  So when we talked to Dr. Gouw, everything he said felt right.  Now I can't wait to see what color those pills are!

Thursday, July 19, 2012

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.

Monday, July 16, 2012

Counseling, Schmounseling

First an update on Trent, he is struggling.  He has no appetite, until 3:00 in the morning and then he wakes me up to tell me he wants scrambled eggs and maple flavored sausage.  Good for you Trent, but I am not getting up at 3:00 to make you breakfast.  He sleeps most of the day and then lays awake at night.  He has his days and nights totally messed up again.  Frustrating!

Trent has been dealing with a lot more pain and nausea.  I called Dr. Carr to figure that out and he believes it is because Trent's chest cavity is almost full of fluid now.  That should be about eight liters, or twenty pounds of fluid to fill his chest cavity.  That is going to take some getting used to.  All the fluid is probably pushing everything around just a bit and causes the pain and nausea.  Again, frustrating.  Trent was doing pretty well but the last week has been rough.  He found a couple of lumps on his chest/ribs and that freaked us out.  The lumps are not small and appeared very suddenly.  Dr. Carr is going to do outpatient biopsies on Wednesday.    If the lumps are cancer, then they will up the dose of radiation to those areas.  Trent has understandably been a bit shaken by the new lumps.  It is like this is never going to end.  Every time we take a step forward, we get slammed back two steps.  We are both beginning to wonder how long we must endure.  But the answer is clear,  we must endure to the end.  Heavenly Father never said anything about enduring until it makes us too uncomfortable, or gets too hard.  So, we now realize that it is time for more help.

I called the Bishop last Thursday to get referred to a counselor and, what I didn't know was that Trent had also called him.  I had a little laugh about that.  He was able to get us set up for this afternoon.  I was actually kind of excited, imagining myself being led into a padded room and the door being shut tightly behind me.  At this point, I might think that was wonderful.  Trent was feeling relieved I think, to be able to get some stuff off his chest.  On the way down he made sure to tell me that nothing he would say was meant to hurt me and that I shouldn't take offense at it.  Um...okay.  I was not planning on a bash session or anything so that surprised me a little.

Our session turned out to be less that wonderful.  I felt like the tactic the counselor used to try to see what he was dealing with was to badger us just a little and get us riled up.  We are not people who are so full of hate that we need a mediator...we are two people who have been worn down by a pretty traumatic two years and needed help finding enough peace to keep us going.  I am trying not to be too disappointed.  We have both agreed to give him another try, but all bets are off after that.

This week is going to be a big one full of lots of appointments and hopefully a few answers.  We have an appointment with a new radiation oncologist because the first one didn't quite work out for us.  Radiation planning will be on Thursday.  Radiation will probably start within two weeks.  We are praying for the strength to keep on going.  All we have to do is one day at a time.

Sunday, July 8, 2012

Radiation? or Not

Trent and I went to see our new radiation oncologist on Thursday.  We were very surprised to hear her say that Trent would have to qualify for radiation.  She was not sure that IMRT was any better than regular old external beam radiation.  She said that she could not distinguish Trent's heart from the surrounding fluid in the left chest cavity and therefore would not be able to safely radiate his heart.  WHAT!!!???

I called Dr. Carr's nurse, Jenn, after the meeting to see if anything had changed.  I told her that IF we were not going to get IMRT we wanted to do radiation in Ogden, but I also wondered if we needed to fight for IMRT.

That kind of threw us both for a loop and we took the night off to go to a movie.  As soon as we sat down Trent started retching.  Perfect.  I ran out and got him a popcorn bucket, just in case.  It was fun but not super relaxing or anything.  We go through the motions with tons of questions still lingering as to what is happening next.

Friday I got a call from Dr. Carr and he assured me that nothing had changed.  We are still on track.  I appreciate the fact that he took time out to call me and chat about the situation a little bit.  We will hopefully hear from him this week and get a few more answers.

Trent was able to make it to church today for sacrament meeting.  It was nice to see him there but he was in quite a bit of pain.  Of course I didn't have medicine for him because he has not been for so long, I didn't think about it.  I had to have Zach run home in the middle of the meeting to get meds for Trent.  He is slowly getting better but still struggles a bit.  He is doing well without the oxygen during the day but uses it at night.  His heart rate is coming down a little bit which makes me feel better.  I think the biggest thing we are dealing with right now is mental.  That is a hard road...and not much fun.  I will work on getting some counseling set up this week.  Time to decompress...

Wednesday, July 4, 2012

Independence Day

Yesterday was our post op visit with Dr. Carr.  We left our house at about 8:45 am and didn't get back until 3:30 pm which made for a very long day for Trent.  He was not looking so good to me and I don't think he was feeling very well.  Before we saw Dr. Carr we had labs drawn and an xray of his chest.  Then we waited, and waited, and waited.  Normally we don't wait too long for Dr. Carr because Trent is a bit of a special case for him.  But yesterday he was very busy because he has been out of the country for two weeks and had a heavy patient load waiting for him to get back.

When we finally saw Dr. Carr one of the first things he asked was how much oxygen Trent was on.  I told him .5 LPM to 1 LPM.  He immediately stood up and took Trent's oxygen off.  His oxygen saturation at check in was 97.  We talked for awhile and looked at pics from Dr. Carr's vacation.  We discussed radiation and where it would be given.  We will have to be at the Huntsman because McKay Dee does not have IMRT.  His treatments will be six days a week for seven weeks.  Trent was joking about using Life Flight to get him back and forth each day.  That sent he and Dr. Carr into a series of fantastical ideas about swinging from ropes and using Trent's cane in adventurous ways.  While that banter was going on Dr. Nagasawe showed my the xrays.  It was amazing.  There is a VERY definite line of fluid about 2/3 up his chest cavity.  We compared previous xrays and the difference is dramatic.  That is exactly what they want to see.  The bronchial stump is now covered by fluid and everything is looking good.  I am in awe that the human body can heal from that surgery and especially that the doctors know it!

Trent and Dr. Carr were still in fantasy land so I turned around, clapped my hands, and said, "Okay boys, how were the labs today?"  That snapped them out of it and we learned that Trent's labs are looking great.  Before seeing Dr. Carr we wondered if Trent would need some blood but again, his labs don't indicate that.  His platelet count and hemoglobin are rising slowly but surely.  His white blood cell count is actually down from the last time we did labs which is great.

We talked to Dr. Carr about using anti anxiety drugs and what is available.  It is not something that Dr. Carr wants to do because they are sedatives and that is not good for a person with one lung.  We discussed counseling and Dr. Carr was so understanding!  He told us he thought that now might be a good time to use a sounding board other than each other.  He said that he could not comprehend what we have gone through and knew of our dedication to one another and we probably need to decompress.  I think he is right.  We are so blessed to have a doctor that is so good for us.  He connects with Trent in a very unique way and at the same time understands exactly what I need (information, numbers, etc) to keep me going too.

After our discussion we tested Trent's oxygen saturation again and he was at 95.  Then they had him walk for six minutes and tested again, still 95.  So... they have discontinued the order for oxygen!  Yay!  We are finally free of those stupid tanks and hoses!   Happy "Independence" day!

Monday, July 2, 2012

Relay for Life 2012

This is what we did this weekend...Relay for Life!  Actually, the part we played was very small this year.  Next year Team Trent will be back in full force.  I was asked to be the guest speaker at the Opening Ceremony.  Megan recorded it for us and it is just a little shaky, sorry!

The chance to speak for Relay for Life was pretty special to me. It was a great experience.  It came at a difficult time though.  A neighbor of ours lost his battle with Sarcoma and left behind a wife and four young boys.  That hurts and hits way too close to home.  I have really had a rough week and am a bit of an emotional basket case right now.  I am so weary of this trial and would like to see an end to all of this mess!  I am pretty sure I am going to lose my job in the near future and I can't afford a gap in Trent's insurance.  I am facing the fact that I am likely going to have to be the major bread winner for my family permanently and I do not feel prepared to do that with the education I have.  So, I have really been feeling the pressure lately.  That makes for a weepy Holly. Ugh.

Saturday was a pretty good day.  Jarom's soccer team made it to the semifinals in their tournament so we took the whole family up to Eden to watch.  We packed a picnic lunch just in case they won and got to play in the championship game.  Unfortunately they did not win.  They ended up with fourth place so we headed home and made the picnic lunch there.  Trent was feeling pretty good so we packed up the kids again and went to see Brave.  It was a fun movie and we all loved it.  Trent was pretty pooped after that and spent the rest of the day resting.

Yesterday during Sunday School, I was asked by the teacher if I was ever bitter because of our trial.  I answered that I had not been bitter, but I have questioned 'why' and been discouraged. I thought a lot about that throughout the day.  I am not bitter, but I think I am really trying hard to fight off the feelings of despair right now.  We are so close to success and I think the adversary is working especially hard on both of us.  I guess it is time to double up on my efforts and lengthen my prayers.  Onward and upward...