Round 16

We just finished getting all the drugs for Round 16.  I can't believe we have done this sixteen times.  The last five rounds are all starting to blur together. It is getting harder and harder to remember all the details, and side effects of the different drugs.  I am so glad I have kept this blog!  I find myself going back to different rounds to see how the drugs treated him so I know what to expect and remember the little tricks we learned to combat the side effects.

It is amazing to me to see the difference in Trent from day to day.  For example:

This picture was taken Tuesday. 

Trent decided he needed eyebrows so he grabbed my eyeliner and fixed himself up right. He didn't say anything about it and called all the kids in for a chat. One by one they noticed his eyebrows and started giggling. Pretty funny.



Wednesday, day 1 of chemo, Trent's legs were pretty puffy so they gave him Lasix.  Thank goodness we were seated right next to the bathroom because he was in there every few minutes.  One time he came back around the corner in this silly grandma wig.  Everyone in the infusion room got a pretty good laugh and Cyd and Brent came running to get a picture with him.  Cyd grabbed this weirdo   african american wig with red highlights.  Quite a trio!

As we were leaving that day Trent found this strip of hair, not really even a wig.  We couldn't decide if it was a comb-over or a mohawk.  Trent chose the mohawk. :)

Out of nowhere Brent appeared-ready for another picture!  We all had a pretty good laugh about that!

Thursday brought more Lasix and a visit from Trisha and Dave.  Trent was still doing pretty good and we enjoyed laughing with them while Trent got poisoned. 



By Friday the swelling had still not gone down so Trent got Lasix again.  He will continue on Lasix for one week at home.  When we left the hospital Trent was still doing pretty good but by the time we got home he looked like this.

This isn't the worst.  As soon as Trent gets the Neulasta shot tomorrow he will go downhill pretty fast.  We are gearing up for an awful week, hopefully not longer than that! :)

Oh What a Difference a Day Makes!

Saturday night as I closed my eyes to sleep the tears kept slipping out.  I couldn't stop them and I didn't have the energy to try so I let my pillow get all soggy and wet.  I was so sick and tired of Trent being sick and tired!  Heavenly Father must have known that Trent and I both had really had it.  The next morning Trent seemed a little better, a little iffy, but better.  I went to church and Trent made it for Sacrament meeting.  By the time we were done with church Trent was much better.  Thank goodness for Tender Mercies!  He said, "I'm back, baby, I'm back!"  That has become our own little "George Castanza" joke.  Trent really is back!  We are going to play as hard as we can for the next week or so until we have to start it all again.  We can't let one moment of feeling good slip by, wasted, when we know there are so many crappy moments to come. 

To see the sparkle in Trent's eyes again is like a magic eraser that makes all the difficult times melt away.  When he is really sick I can feel myself retreat from him and the situation.  I know I shouldn't but it is so hard to watch and it is "safer" for me to act like I am not affected by it.  I almost become mechanical.  I go into "Nurse" mode and kinda of turn off the "Wife" part.  I figure I should be able to fix it all with his drugs-(only for him, not me ;)! )  It is frustrating when it doesn't work like that.  So, when the sparkle returns, that is my drug! 

The tender mercies in our lives are the things that get us through, small reminders that Heavenly Father IS mindful of me and my wet pillow. 

Round 15 is NOT so Great!

Round 15 has beaten Trent up pretty good.  He has been in bed since about Friday.  He did get up for church but probably shouldn't have.  He has had nausea, diarrhea, unbearable pain, mouthsores, anger, night sweats, sleeplessness, fatigue, horrible dreams, etc.  He has really gone the rounds with this one.  Right now we are waiting to hear if he will be put on IV fluids tonight.  I don't think either one of us would mind if he was.  He can hardly eat because his mouth is full of sores and nothing sounds good to him.  He has been on Diflucan for a couple of days now to combat the mouthsores.

The thought of possibly four more rounds is awful.  We are both getting very tired of this whole mess. However, we are hanging on, by a thread, but hanging on nonetheless.

Round Fifteen-Ugh

Yesterday Trent started round 15.  It also happened to be our 16th anniversary.  This is the second anniversary we have "celebrated" at the Huntsman.  Not something I would like to make a habit of.  We each got a really cool gift.  Trent got $$$$ worth of poison chemo, and I got Invisalign.  How romantic, I know. 

When we were just about to start the chemo they informed us that there is a nationwide shortage of Doxrubicin, which is one of the drugs Trent is on.  In its place, they gave him Epirubicin.  It is a similar drug in the same drug family but is not commonly used here at Huntsman.  Because Trent does not have a tumor in his brain they decided Epirubicin was a good substitute because it does not cross the brain barrier as Doxrubicin does.  It also takes only 1/2  hour to get instead of three hours.  BONUS!  I, of course, needed all the details and asked for a drug fact sheet on Epirubicin.  After I read it I gave it to Trent while I talked to the nurse about it.  Trent interrupted us and said, "Hey!  We're good!  It says here that Epirubicin kills cancer cells so no worries!"  Very funny, Trent...I still need all the details!

While I was gone getting my teeth done, Trent talked to Dr. Gouw about the treatment plan.  It changes every time we are here!  Now we are for sure doing another round of chemo after this (Round 16) and then a scan.  If the tumor is responding then we could do as many as three more rounds before surgery.  Trent told me that when we changed chemo the last time the number 17 popped into his head.  So maybe that will be the lucky number for rounds of chemo.  Who knows.  The plan will probably change with the next round of chemo. 

Lately I am feeling like I would just really like to be done with this already.  It has been a very long time and I am ready to move on.  In many ways our lives are on hold, but our children keep growing.  We have no house, no job, and no certain future.  By the time we have those things our kids will be moving out of the house.  I have really been praying for patience to endure this trial.  Then today on the way to Jonathan's post-op appointment I was listening to a talk on CD by S. Michael Wilcox called "The Fourth Watch".  The whole jist of the talk is that our God is a Fourth Watch God.  He doesn't race to the rescue with the answer we want the very first time we ask.  He comes in the fourth watch, after we have been humbled and have endured, and have learned from whatever it is we are going through.  The exception, of course, is in forgiveness.  In that instance He is a first watch God, willing to forgive the second we ask for it, however many times that is.

In part of his talk, Bro. Wilcox is recounting the story of the Brother of Jared and the eight barges he built under direction from the Lord.  (Book of Mormon, Ether 2) The vessels were built "tight like a dish" so no water or wind could get in them as they crossed the stormy sea.  There is more to the story but the part that hit me like a ton of bricks was the fact that the Lord helped the brother of Jared prepare the vessels tight like a dish to withstand the storms that would surely come.  The Lord could have simply stilled the storms, but instead He prepared the vessels to withstand the storm.  Bro. Wilcox goes on to say that when it seems we are in the fourth watch and the Lord still has not come, it is because He has prepared us beforehand and made our vessels tight like a dish to withstand the storms in our lives.  If we had not been prepared, he would surely have stilled the storm in the first watch. 

I have listened to this talk several times and gained different things from it each time, but this time I drove down the road struggling to see through my tears wondering how tight is our vessel?  It must be pretty tight because it seems like we are in the sixth or seventh watch by now.  I can honestly say I KNOW we were prepared for this trial.  I can look back at our lives and understand why certain things happened to us at certain times.  It was to prepare us for cancer.  I don't even dare imagine what cancer is preparing us for.  Could there be something worse waiting for us?  Or is our suffering meant to give us more compassion for others and to prepare us to be instruments in the Lord's hands?  I certainly hope it is the latter!

Great Week!

This has been such a good week for Trent!  Friday he began feeling much better so we decided to take advantage of it.  We took all the kids and drove to the City of Rocks in Idaho on Saturday.  It was so much fun!  We love a good road trip and we needed to pull our kids around us with nobody else and just enjoy each other. We got out and climbed all over the rocks and had a great time.  Trent was okay but admitted that it is difficult for him to keep his balance on all the uneven surfaces.  He watched from the burb for most of it.  

Zach, Mallory, Trent, Jarom, Jonathan, Megan

Sunday night we lit a bunch of fireworks.  Trent bought a huge box that I thought was way too many fireworks.  When I mentioned that Trent said, "Holly, I missed the 4th of July this year and last, I missed the 24th last year too.  So this year I have to make up for it!"  Fine.  Good point.  Because of that we had a dandy little fireworks show that lasted quite awhile.  Trent was having a great time and kept giggling like a little boy.

Monday morning we took the kids over to Zion Park (right next to our house) and launched the model rockets Trent and Zach built for Zach's merit badge.  It was way cooler than I thought it would be and we had a great time.  All the kids took a turn pressing the launch button.

Zach and Trent with their model rockets.

Last night we headed to Pack Meeting and Yates Lake in Honeyville.  It was such a nice park and Trent loved it.  He kept saying he felt like himself again.  It was so nice.

I guess if this is how this chemo cocktail is going to treat him, we can take it.  One horrible, awful, yucky week is alright if you know you get two good ones after that.  Of course, I am not the one who has to do it either.  We just have to take advantage of every good minute we get and not put things off until tomorrow.  That's probably a good way to live life all the time.  You just can't let life pass you by, even if you are healthy.

Feeling good and loving it!

Relief

We just heard some great news.  Trent does not have cancer in his brain!  Now for the background.  The last few days Trent has had a lot of numbness in his legs and arms.  Not a good sign.  I called Katie, our nurse, on Tuesday and told her about it.  I had already done my research and knew that numbness was a side effect of Temodar, one of the chemo drugs Trent is on.  It was listed as one of the more severe side effects that a doctor should be notified about which is why I called Katie.  When I told her about it she was concerned and wanted to talk to Dr. Gouw.  She called yesterday and said they felt that Trent should have a brain scan ASAP.  Of course they would be looking for tumors in his brain.  Not a pretty thought.  We went in this morning and had the brain scan.  Just a few minutes ago we got the call we had been praying for.  Negative results.  Yeah!  It sounds weird but negative is good in this case.  There is no cancer in Trent's brain so we are going to continue to monitor the side effects of the drugs-assuming that is what is causing the numbness.

Trent's case was also discussed in the sarcoma conference on Monday at Huntsman.  All the different types of oncologists; radiation, chemo, surgeons, agreed that Trent needs surgery on his lungs again regardless of what the chemo does to his tumor.  We are still hoping it will shrink it but if it doesn't the thinking is that because it is only one tumor it should be removed and then follow up with a couple more rounds of chemo.
That is not a fun thought because this round has not been too good.  Surgery is not exciting either but we will do what we have to do to kick this thing once and for all!

Blessings of Adversity

Trent was asked to speak about a month ago in Stake Priesthood Mtg that was yesterday.  He had been preparing for quite a while and was excited to have the opportunity.  Then we found out about the new chemo plan and it didn't fit really well with the meeting.  He was scheduled to have his Neulasta shot 24-48 hours after the completion of chemo, so we waited until just after he finished his talk to give it to him because it always hits him really hard.  He spoke yesterday at 7:30 am and I gave the shot at about 8:45 am (hour 46 post chemo).  Almost immediately afterward he tanked.  He did make it to church but I had to come home to get him pain meds and make him a shake.  We figured everyone would excuse the 32 oz mug he sipped on through Sunday School. :)  He slept all the way through sacrament and crashed as soon as we got home.  He is really having some bad pain right now and is just plain feeling horrible.  I hope this round at least gives him a couple of good weeks before we do it all over again.  It is so frustrating for both of us because he was doing so well and then he bottoms out like this. Ugh.  The thought of possibly three more rounds is depressing.  However, there are greater powers at work here and I know that, so we pray continually for patience.

Trent wanted to share the talk he gave yesterday on the Blessings of Adversity.  It pretty much sums up how he has viewed this whole experience.  I really wish I could have been there to hear it.  I thought I might have to give it for him because he was so sick.  He took Zach instead, just in case Zach needed to read it for him.  We heard from many people yesterday how powerful the meeting was and how inspirational Trent's message was.  I hope you enjoy it as much as they did!

The Blessings of Adversity 

I consider it a great privilege to have this opportunity to be able to speak with you about the tremendous blessings that are abundantly given when adversity befalls each of us.  Waiting upon God with great patience and having an unbending faith that He will hear our pleas, answer our prayers, provide comfort and hope are essential components of the Plan of Salvation that bind us eternally together.  I testify that our Heavenly Father is acutely aware of our needs and that He is in absolute control.  If we are able to step away from the challenges we face for a moment, there is ample evidence of divine intervention, where God has placed both people and circumstances in our path to help strengthen us individually and as families in times of unimaginable adversity.  He knows exactly what we will need to overcome those trials.  The Plan of Salvation that encompasses every aspect of this mortal existence is there for each of us to benefit from in times of calm and during the storms of our lives.

In the New Testament (JAMES 1:2-3) the apostle James counsels “My brethren, count it all joy when you fall into divers temptations” the Joseph Smith Translation substitutes temptations as “many afflictions”.  Indeed this mortal life is full of afflictions that are meant to prove us worthy and more importantly to gain access to the blessings promised for pursuing after righteousness.  James also states the following “Knowing this, that the trying of your faith work patience”.  It is because of our willingness to surrender our will to God through patience and long suffering that we relinquish control to the one individual with a complete understanding of what is best.  That exercise of faith requires a mortal being with limited sight to trust an immortal being with a perfect view from beginning to end.

It’s crucial that I begin with a brief explanation of the circumstances that have defined my recent life.  To merely state that over the course of this past year and a half I was sick, would be a gross understatement.  After being misdiagnosed for five months, it was in May of 2010 that I was correctly diagnosed with stage IV cancer and the life I knew, would never again be the same.  This was brought on without any warning, no known cause, and a mystery that has baffled the medical staff dedicated to preserving my life.  We started with two very aggressive rounds of chemotherapy because of the advanced nature of the disease.  They were unsuccessful and complicated by a staph infection that threatened to take my life.  A decision was made to immediately remove the college football size tumor that had developed on my hip and treat the infection.   After recovering for a short time, it was determined that two more rounds of chemo should ensue to battle the remaining tumors that had grown in my lungs, but this too was unsuccessful.  With no signs of tangible progress, another change was mandated that ultimately entailed an additional seven rounds of chemotherapy.  It was nothing short of miraculous that in February of 2011 I finally qualified for thoracic surgery, to remove the few remaining tumors from my body.   

We moved forward with the hope that this ordeal was far behind our family and we would be fortunate enough to continue onward with the pursuits of life. However, in June another tumor was found and two more rounds of chemo have ensued.  Our last scan determined that the tumor was still growing and at least two or possibly four more rounds of chemo, and probably another surgery is in the works to remove this new tumor. 

  Every aspect of being ill from the aches, pain, nausea, fever, chills etc. I have experienced over and over again and to extremes during this adversity.  I would spend the entire year in bed, unable to do much of anything for myself, a glaring contrast to the way I had lived my life before, now completely dependent upon others for everything.   With these events unfolding day by day our family’s future was very uncertain and yet there was great peace in knowing that whatever was going to happen would ultimately be for the very best.  I learned to trust more absolutely in God.

The scriptures repeatedly testify to the many types of adversity we face and the opportunities given to each of us to overcome those trials.  It is a tender mercy from God that there are blessings found when our spirits and physical bodies are broken.  In the Old Testament, (Psalms 145:9), David proclaims “The Lord is good to all: and his tender mercies are over all his works”.  All too often the negative aspects seemingly outweigh the positive if we fail to recognize how much of our lives are truly impacted by God.  There has been ample evidence of God’s tender mercies repeated countless times during this trial that have demonstrated His magnificent love and concern for our family.   I have found solace in the teachings from the prophets that proclaim how adversity has the ability to draw us closer to God and the abundant blessing He desperately wants to provide to His children. 

Perhaps the counsel given in the Book of Mormon, from Lehi, a father, to his son, Jacob about “opposition in all things” (2 Nephi 2:11) is a timeless reminder that this life will be full of challenges.  It’s because of this opposition that the greatest growth occurs.  To understand the admonition from the prophet Lehi “righteousness could not be brought to pass, neither wickedness, neither holiness nor misery, neither good nor bad.  Wherefore, all things must needs be a compound in one.” we need this opposition in order to meet our full potential.  It’s a necessary part of our development as spiritual beings, living a mortal existence, to face adversity.  This adversity allows each of us the opportunity to more fully appreciate how wonderful our Heavenly Father is.  If we step back from our reality and look at the bigger picture we will assuredly see the hand of the Lord guiding us, protecting us, and providing a way long before and during our most difficult and trying times.  We have never been left to do it alone.  How humbling this has been for us to witness.

In the (Doctrine & Covenants 122:7) the Lord spoke to the prophet Joseph Smith while imprisoned in jail at Liberty, Missouri and proclaimed “that all these things shall give thee experience, and shall be for thy good.” We know that this was a time of great distress because of the tremendous persecutions the saints were facing and that the pressure was deeply troubling for the prophet.  In the midst of this adversity the saints were being prepared for incredible blessings due to their faithfulness. 

I have also felt on many occasions that in the deepest moments of despair that the blessings our little family was receiving were not only giving us valuable experience but were also for our eternal benefit.  However discouraging and ugly cancer was in a physical and mental state, it has been comforting that our spiritual framework was sound.  It provided the necessary relief that acted as a counter balance to the disruptive forces that were attacking my system.  I’m thankful for the teachings of the scriptures and the simple fact that they provide strength when times are dark and uncertain.  The comfort gained from reading these passages in the scriptures is quite remarkable.  I have experienced it time and again during this battle.

The hymn “Be Still My Soul”, # 124, has messages that are quite profound.  In the first verse written by Katherine von Schlegel, she eloquently demonstrates the calming effect that is attainable when we turn to God and place our faith, devotion and hope towards the Lord, that anything is truly possible.

1. Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev’ry change he faithful will remain.
Be still, my soul: Thy best, thy heav’nly Friend
Thru thorny ways leads to a joyful end.

2. Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

In the third verse we’re reminded about the disappointment, grief and fear disappearing and love’s purest joy restored.  How magnificent a reward to have all safe and blessed when it counts the most.  I sincerely hope that I’ll endure this trial well.  I have witnessed through Priesthood blessings, charitable acts, family fasting, prayer and service rendered that “love’s purest joy restored” is absolutely real.

3. Be still, my soul: The hour is hast’ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

In the beginning of this trial, the effects of this disease were terrifying and the range of emotions surrounding our immediate future was overwhelming.  The mere thought of having a disease that would brutally attack my body without regard was challenging to cope with. 

My concern was directly related to the possibility of not being able to care for my family’s immediate needs and provide the necessary opportunities for their future growth and welfare.  Their well-being was weighing heavily on my mind.  It was at this difficult moment that I was given a priesthood blessing from our bishop in Lincoln, Nebraska.  Bishop Hahne declared that I would be made whole and live to raise my children to maturity.  He confided much later that it had been a real trial of his faith because although he had been prompted to say those words during that blessing, as a medical doctor he knew of nothing that supported what he said.  These promises have since been repeated numerous times in subsequent blessings of healing and comfort throughout a very difficult year.  I have grown to appreciate the real power of the priesthood in action and have seen a peace restored in my life regarding the direction that Heavenly Father desires for my life.  I have developed a more abiding love and respect for Him because I have witnessed His remarkable love and concern for me, individually.  Knowing and feeling of this genuine love helps us overcome the most challenging obstacles we may face.

There have been several instances where we have seen the love of our Heavenly Father through people He has placed in our lives.  When I had first fallen ill, I was an unemployed graduate student and my wife was only working part time and we did not qualify for insurance with her company.  The expenses for the treatment of cancer are staggering and without insurance we would have been sunk.  Before the MRI confirmed that it was indeed cancer , my wife’s boss, Craig Larabee,  had suspicions that it was worse than what we were expecting and had already decided to grant my wife full time status with the necessary amount of hours to qualify for full coverage.  He was willing to give up his personal vacation days to help guarantee the policy would be intact when we needed it and make certain that our family was okay.  This act of kindness continues to resonate with his constant worry for our family throughout this ordeal and we are eternally grateful to Heavenly Father for Craig’s powerful influence in our life.  This was not a coincidence.  He is a genuine friend that has strengthened my wife’s testimony quite significantly by helping her recognize Gods hand in all things.  His church group would immediately bring in boxes of food, supplies for our home, gifts for our kids and most important, prayers on our behalf.

To this day the idea of other Christian denominations actively praying for a sick father of five who happens to be LDS has been inspiring.  I have been humbled by this charitable act because I know for a fact that it did not happen just once but in many cases has continually occurred throughout the year.  Bereans, Catholics, Lutherans, and Latter-Day Saints, etc., pleading to heaven for a common cause, many individuals whom I have never personally met are examples of truly wonderful people and it’s profoundly humbling to have strangers pray on your behalf. 

Another incredible blessing has been returning home to Brigham City to live with the Frandsen’s.  We have sincerely appreciated the genuine kindness and concern shown for our family at a time when everything normal in our lives was turned upside down.  We would have experienced something very different had we not been able to have a place to live and focus entirely on simply enduring this trial without so many additional worries that our family was faced with.  They have been nothing short of outstanding and exemplify charity at every turn.  It has become a huge blessing that we will always hold dear and perhaps never be able to repay. 

These are just a few examples of the blessings that we have witnessed firsthand through adversity.  Despite the challenges that have shaken our foundation we are more able to handle these various problems because we have been strengthened repeatedly and felt the guiding influence of our Heavenly Father.  I take great comfort in the opportunity I’ve been given to wait upon the Lord. In the New Testament, (2 Corinthians 12:10) the apostle Paul wrote “Therefore I take pleasure in infirmities….for when I am weak, then I am strong.” This statement is applicable to any situation because when things seem impossible they are actually achievable through Christ.  I marvel that He willingly experienced the pain, suffering, sorrow and despair through the atonement that would allow for a much greater understanding of the obstacles we face.

I have gained a tremendous level of gratitude for the pure blessings of the gospel.  The positive influence on our family has been manifest through numerous acts of compassion, love and service given through grandparents, parents, siblings, uncles, aunts and cousins.  It has most assuredly provided a constant protection in the thick of the storm.  Having this knowledge has reminded me of the amazing love that our Heavenly Father and Christ have for each one of us no matter the difficulty we face.  I’m thankful for the blessings made available through adversity that demonstrate how the Plan of Salvation is meant to save us all.  I love what the gospel represents that no matter how difficult things may be there is always hope. 

Perhaps the greatest measurable blessing of adversity is being able to know our Heavenly Father and His son Jesus Christ.  It’s this relationship that has provided a sure foundation, where waiting upon the Lord with faith and patience is a blessing that we should all strive for in our lives.  The Church of Jesus Christ of Latter-day Saints provides safety with the knowledge that our Heavenly Father is waiting with open arms for our return.  The lessons I’ve learned over this last year as we have battled cancer have assured me that developing patience and faith in God’s plan is a remarkably powerful means to overcome the problems we face in this lifetime.  I am grateful for all of these blessings found through adversity, in the name of Jesus Christ, Amen.  

Trent Hal Rasmussen/Stake Priesthood Meeting/July 17^th, 2011