About two weeks before Trent passed away he was really struggling mentally. He was tired of being in pain and being frustrated by the seemingly endless setbacks he was experiencing. As we were talking he mentioned how much support I had been given through this blog. He was right. It has been a tremendous strength to me to read your comments of love and encouragement. However, because I am the author of the blog, it seemed to him that the comments were more for me than for him. I know that is not the case but he needed a little pep talk. I had been meaning to write this post then but the hectic events of those last days got in the way.
Now more than ever, I need to preserve his memory, especially for my little ones who may not have many memories to hang on to. Please share your memories of Trent if you knew him, or how he affected your life if you did not. It would mean so much to me and our children. They need to know what he was like at all stages of his life, not just what I can tell them.
Thank you for taking to the time to help preserve a memory.
Thursday, August 30, 2012
Tuesday, August 28, 2012
Our Journey Goes On
First of all, THANK YOU. The outpouring of love and concern for our family has been overwhelming. It has been very comforting to hear of so many who are praying for us. Believe me, we need it.
When I started this blog it was intended to be a record for my children of the events that would happen while we fought cancer. It turned into therapy for me and allowed me to get my feelings out and process them, then move on. At times I have gone back and read some of the posts. That is very hard. It is like opening up a fresh wound. In the past week I have begun to realize that our journey is not over. Trent's journey has ended and he is now whole and free from pain. However, I am afraid that mine and our children's journey is just beginning.
Over the course of the past 28 months we have seen many miracles and received many answers to prayers. Our lives have been blessed beyond what we ever could have imagined. We prayed so hard for the mighty miracle of healing for Trent. Physically, we did not get that miracle. I believe his miracle was in his never-ending faith. Even up to the last day of his life, we all believed he could be healed, by the power of God.
Now we pray for a new miracle, the healing of our broken hearts. I am lost without the love of my life. Right now I can't imagine wanting to endure the next 50 years of my life without him. The only thing that gets me out of bed each day is knowing that five beautiful children are depending on me to be strong. I have begun fervently praying for the second coming of Christ, to heal our hearts and reunite my family.
I know that Trent wants me to be happy but it is so hard. I am not mourning the Trent from one week ago though. His body was so broken and tired. I would watch him and think, "How can he come back from this?" I am mourning the loss of Trent from three years ago. He was so fun, vibrant, and full of life. He was happy, healthy, and energetic. Thankfully, those are the memories that come to my mind when I think of Trent. The children have expressed that as well. When they talk about or dream of Trent it is healthy Trent. That is the Trent that we will miss.
I know in my heart that he suffered all that he could and he needed rest. In fact, I am happy for him! My first thought after he passed was that he was no longer in pain and that brought me such joy and relief. Watching a loved one suffer is the most awful thing I can think of. I can only hope that Trent feels the same and will work hard on the other side of the veil to prepare a way for me to join him quickly.
Before his passing Trent had asked me to give the Euology at his funeral. I was not sure I could do it but I agreed. I was grateful for the chance to honor Trent publicly and I know that Trent was standing beside me the entire time...
When I started this blog it was intended to be a record for my children of the events that would happen while we fought cancer. It turned into therapy for me and allowed me to get my feelings out and process them, then move on. At times I have gone back and read some of the posts. That is very hard. It is like opening up a fresh wound. In the past week I have begun to realize that our journey is not over. Trent's journey has ended and he is now whole and free from pain. However, I am afraid that mine and our children's journey is just beginning.
Over the course of the past 28 months we have seen many miracles and received many answers to prayers. Our lives have been blessed beyond what we ever could have imagined. We prayed so hard for the mighty miracle of healing for Trent. Physically, we did not get that miracle. I believe his miracle was in his never-ending faith. Even up to the last day of his life, we all believed he could be healed, by the power of God.
Now we pray for a new miracle, the healing of our broken hearts. I am lost without the love of my life. Right now I can't imagine wanting to endure the next 50 years of my life without him. The only thing that gets me out of bed each day is knowing that five beautiful children are depending on me to be strong. I have begun fervently praying for the second coming of Christ, to heal our hearts and reunite my family.
I know that Trent wants me to be happy but it is so hard. I am not mourning the Trent from one week ago though. His body was so broken and tired. I would watch him and think, "How can he come back from this?" I am mourning the loss of Trent from three years ago. He was so fun, vibrant, and full of life. He was happy, healthy, and energetic. Thankfully, those are the memories that come to my mind when I think of Trent. The children have expressed that as well. When they talk about or dream of Trent it is healthy Trent. That is the Trent that we will miss.
I know in my heart that he suffered all that he could and he needed rest. In fact, I am happy for him! My first thought after he passed was that he was no longer in pain and that brought me such joy and relief. Watching a loved one suffer is the most awful thing I can think of. I can only hope that Trent feels the same and will work hard on the other side of the veil to prepare a way for me to join him quickly.
Before his passing Trent had asked me to give the Euology at his funeral. I was not sure I could do it but I agreed. I was grateful for the chance to honor Trent publicly and I know that Trent was standing beside me the entire time...
Euology for Trent Hal
Rasmussen
We are gathered here to honor and remember the love of my
life. I have had the joy of being united
with Trent physically for seventeen years, and spiritually for eternity. While the physical separation came way too
soon, I know Trent and I will be together forever and our reunion will be
sweet.
I first fell in love with Trent’s sense of humor. On our second date we went to see Handel’s
Messiah. By now I had realized that we
shared a Humanities class and we had our final coming up. I turned to Trent and quizzed him, “What is
the difference between an aria and an oratorio?” He replied, “Uh, the spelling?” I knew right then that he was someone I
wanted to get to know and he spent the next seventeen years making me laugh.
Trent was the most chivalrous and considerate man. He always got the door for me even when he
was sick and walking was difficult.
After his sternotomy as he was laying in the ICU, he asked a nurse to
call me so he could make sure I had arrived home safely. He was such a gentleman and always concerned
for my well-being above his own.
Early in our married life, Trent was working two jobs and going
to school. We had two young children and
the only time was saw Trent was for about one hour at lunch time. We lived in a small house with only a swamp
cooler during the hot summer months.
Each day he would come home, have lunch and lay in the hallway directly
under the swamp cooler. He would stretch
out his arms and Megan and I would cuddle in and Zach would crawl on top of
Trent. We talked, laughed and tickled
there enjoying what was dubbed as “Family Council”. As our family grew and we lived in different
houses, Family Council, migrated to different rooms, or beds that could
accommodate all of us, but it was always filled with precious family time.
One of Trent’s greatest joys was road-tripping. He loved having the family all in one place
where no one could escape, to just talk, sing, and enjoy each other. A few years ago while we were living in
Nebraska, we had planned a trip home just after Christmas. However the weather did not cooperate and our
trip was canceled. Trent was not to be
deterred though. He quickly called my
sister who lived in Texas to see if we could drop in for the weekend. Within two hours we were loaded and pulling
out of the driveway, headed off to one of our most memorable adventures. We spent New Year’s Eve in Oklahoma City in a
little hotel room toasting shakes from Arctic Circle as we watched the ball
drop. Another time we were headed back
to Nebraska from summer break and Trent decided to take a few detours. We started off at Martin’s Cove, discovering
and learning about our ancestors, and ended up taking an eight hour detour up
to see Crazy Horse and Mount Rushmore.
Trent was spontaneous and always looking for an adventure to be had and
a memory to be made.
Trent loved to bake and cook. He was always looking for new recipes to try
and new foods to eat. His opinion was
that food should be “Crazy Good”. As
soon as he was finished with one meal, he would begin dreaming about what he would
eat for his next meal. Trent had a
sweet tooth that was unparalleled. His
trips to the store for “one thing” often turned into Trent returning with two
grocery bags full of sweets. He loved
Swedish fish, Jordan Almonds, and licorice.
He was never one to turn down a dessert until he got cancer. He then
surprised us all by asking for carrots and ranch, or a dill pickle.
Trent loved surprises.
He loved them so much that five times he tried to get me to not tell
anyone when we were expecting. His big
surprise would be to just show up at our parents’ house with a new baby. That would
be a fun surprise but I was never able to hide the bump for that long.
Trent had a unique lingo all his own. He had many phrases that were so Trent, such
as, “Cool, cool” or “nothing short of wonderful”. As he would leave the infusion room he would
call out to the other patients, “God speed, keep fighting.” He often created
acronyms in place of an entire sentence and would then expect me to know what
he was talking about. After a while, I did
come to understand him and would often end up being an interpreter for
others. Truly, that is something I will
miss greatly.
Trent worked so hard to gain an education. He wanted his children to see the value in
getting an education and make that a priority in their lives. Part of his joy in attending UNL to get his
Master’s Degree was going to the Husker Football games. We each got to take turns going to a game
with him. I am not a huge football fan but it was sure fun to watch him get so
excited about the game. His enthusiasm
for life in general was contagious and he was so fun to be around. He always made you feel good and like life
was such a treasure.
He was so proud of his ability to work hard and provide for
his family. He worked harder than anyone
I have ever seen. At one point in our
marriage he was going to school full time, serving on the City Council, serving
in the Young Men’s, working 60+ hours per week and still finding time to be
with our family. He knew that if we were
ever in want, he had the ability to work harder to fix it. Cancer changed that and it was probably one
of the most difficult things for him to face.
Not being able to care for his family weighed heavily on him. But at the same time, it gave me one of the
most beautiful blessings of my life. I
was honored to serve him every day. For
2 ½ years I was by his side attending to his needs. He didn’t make it feel like work. It just made me love him more than I could
have imagined.
Trent loved to fish and be outdoors. He always wanted the best of everything and
when his flyrod was not quite up to par, he decided he would be happiest with
his own craftsmanship and built his own rod.
Trent loved to build things with his hands. He recently taught himself the art of
woodcarving. His first and only project
would become his Masterpiece. He could
build anything he could dream up. He built much of our home in Providence and
when we needed furniture, he built that too.
He built the most amazing
playhouse for our kids that quickly became the neighborhood play toy and party
spot. Before cancer he was so strong
physically. So strong in fact, that our
fire escape plan for the family consisted of, “Stay where you are, Dad will
come get you.”
As cancer took his physical strength he was given more
emotional, mental, and spiritual strength than you could imagine. His determination to fight this horrible
disease was amazing. His immediate
reaction to the diagnosis was to fight with everything he had and pull his
family close and treasure every moment. Trent
loves his children so much. We
celebrated our 17th anniversary 3 weeks ago and as we were
reminiscing I asked him what the happiest day of our married life was for
him. I was kind of fishing for him to
say our wedding day, of course. But his
immediate response was, “Each day we brought a new baby into our family.” I remember being so happy, and maybe a little
bit jealous, as our babies would reach for Trent instead of me. They all adore their Daddy. He was such a “hands-on” Dad. He was always the one to get up in the night
with our babies, while I pretended to be asleep. He would change them, rock them, and bring
them to me. He taught them to fish, to
draw, to play soccer, and encouraged any activity they wanted to try. He taught them the gospel and showed them
each day how to live it. Each time he
went to the hospital he would tape a picture of our kids on the IV pole so he
could always see them. He would then introduce
them to all the medical personnel and make sure they knew that his kids were
the reason he was fighting. Trent worked
very hard to create a relationship with each one that was special to them. He took them to RSL games, Husker games,
movies, and on special dates. He almost
never let a chance go by to spend an extra few minutes with his kids. Our kids have been so blessed to have him physically
for the short time they did. The
memories we have made will be treasured.
I know he will stay near us and will be there when we need him.
Trent led by example.
He honored his priesthood and used it to bless me and our kids. It was not difficult to see Trent’s
goodness. He was unlike any man I have
ever met. His testimony was strong and
unwavering. He was one of those who just
always had a testimony and it was obvious.
He shared his testimony everywhere he went. He touched many lives and has undoubtedly
changed them for the better. A line in
his patriarchal blessing states that he would be honored and respected for the
honesty of his heart and the purity of his soul. I think the crowd that we have here today can
attest to that. Everyone who met Trent
loved him. He had a way of making
everyone his friend. I could go on and
on about how great Trent is but I am sure you all know and feel it
already. He is a mighty man and heaven has gained a
powerful angel. We will miss his
Pillsbury doughboy laugh, his happy dance, and even his constant teasing. We will miss his ready smile, his quick wit,
his unquenchable thirst for goodness. We
will miss our Daddy, my best friend, my husband, my love. I am the luckiest woman in the world to know
that he is mine forever and one day he will welcome me into his arms once again
and all the pain of our separation will vanish. Until then, God speed Trent, we love you
and we will keep fighting.
Tuesday, August 21, 2012
Forever, My Love
In the early hours of the morning on Tuesday, August 21st,
2012, Trent Hal Rasmussen quietly responded to the invitation of his Father in
Heaven and returned home. He was born on March 20, 1973 and is survived by his
sweetheart, Holly, and his five children Megan, age 15; Zachary, age 12; Jarom,
age 9; Mallory, age 7; and Jonathan, age 3.
He is also survived by his father, Douglas Rasmussen of Rexburg, Idaho;
his mother Joellynn Hartnett of Tuscon, Arizona; his siblings Travis (Angie),
Rexburg, Idaho; Tracy Morris, Rexburg, Idaho; Trisha (David) Draney of Rancho
Cucamonga, California; Troy (Kristi), Rexburg, Idaho; Trevor (Heidy), Rexburg,
Idaho and thirty nieces and nephews.
Trent fought valiantly for the past 28 months to defeat
cancer with the only objective of staying alive to raise his children to
maturity. He was passionate about
politics at every level, having served for a short time as a City Councilman in
Providence, Utah. He was also fervent
about Nebraska Huskers football, and Real Salt Lake soccer. His greatest joy was to play with his
family. His highest objective was to
make great memories. From the moment he
was diagnosed with Pleomorphic Spindle Cell Sarcoma he always introduced himself
to medical personnel saying, “Hi. My
name is Trent Rasmussen and I am a cancer survivor.” He also planned several family outings the
sole purpose of which was to have fun and make memories.
He graduated from Madison High School, Utah State University,
and the University of Nebraska-Lincoln.
He was a skilled carpenter, artist, and landscape architect. He had
fulfilled all of the academic requirements to receive his Masters Degree in
City Planning excepting a thesis when cancer changed his life.
He was a faithful member of The Church of Jesus Christ of
Latter-day Saints and shared his testimony frequently. His expressions of faith never mentioned his
battle, but rather reinforced his soul deep conviction that life is good and
our Heavenly Father loves His children completely.
Trent married the love of his life, Holly Frandsen, in the
Idaho Falls Temple, on August 3, 1995. From
that day on, the most important thing in Trent’s life was his family. He loved Holly and their children with all of
his heart.
He was a constant teaser and no one was exempt. He loved to bake and prepare meals and upon
tasting his creation he would pronounce his judgment, saying, “Crazy good. This is just crazy good.”
He felt drawn to everyone who was or is fighting cancer. Every time he received chemotherapy he would
visit everyone in the infusion center to encourage them and buoy them up. He would reassure them that they could win
their struggle telling them, “God speed. Keep fighting.” He willingly sacrificed his body through seven
major surgeries one of which took all of the major muscles in his hip. Another took his lung, his diaphragm, and
part of his pericardium. On two
occasions he was told that there was no evidence of disease but each time the
cancer would return with a vengeance. At
each juncture of his treatment he smilingly accepted the recommended procedure
but admitted privately that he was terrified.
Despite those fears he faced death with an indomitable courage. His resilience and determination was remarkable. Holly was by his side constantly for the
duration. She questioned the medical
staff until she fully understood how she could care for him. She protected him with fierce determination
but was always submissive to Heavenly Father’s will. She was literally at his beck and call from
the beginning to the surrender.
Visitation will be at the Box Elder Stake Center from 6:00
p.m. until 8:00 p.m. on Friday, August 24th, and Saturday, August 25th
at the same location from 9:00 a.m. until 10:30 a.m. Memorial services will follow at 11:00 a.m.
Interment will be at the Brigham City Cemetery.
Online condolences may be posted at RasmussenMortuary.com.
A special, heartfelt appreciation is extended to all of the
doctors, nurses, and staff at the Huntsman Cancer Hospital who cared for him
with love and compassion.
Sunday, August 19, 2012
One Day at a Time
I have been putting off posting for a couple of reasons...first, what follows is pretty traumatic for us, and second, I am not sure I can find the right words. And besides that, it may well be the longest post in history. Here goes...
Thursday 7:30 am
We got up to got to SLC for the surgery. As we were heading out the door, my dad offered a blessing to Trent. He of course accepted gratefully. He was pretty 'iffy' that morning and needed all the strength and reassurance he could get. Once we got to the Hunstman they rushed us right in to pre-op. Apparently they had been waiting for us. The anesthesiologists came in and discussed sedation for the surgery. At first we were thinking a MAC (monitored anesthesia care) was the best option. It is more like a heavy local anesthesia. After seeing how big of a hematoma Dr. Carr would be working on and noting that Trent has difficulty breathing while laying flat, they decided that a general anesthesia was the better choice. Dr. Carr came in and went over the details of the surgery and marked Trent's chest.
9:30 am
We said our goodbyes and I went to the dreaded waiting room. About forty minutes later I saw Dr. Carr walk very quickly through the waiting room headed towards the OR, staring at his text pager. At that point I thought, "I sure hope nothing is wrong."
12:30 pm
Dr. Carr and a woman that I assumed correctly was a social worker, came out and gestured for me to meet them in the consult room. I knew that wasn't good if he brought along back up. Angelique, another social worker, came bursting through the door and said she had run all the way over when she heard about Trent. When I sat down Dr. Carr said, "Wow, so, uh things didn't go exactly as planned. Trent actually coded on the table before we could do the surgery." He went on to explain that he thought that Trent had such low blood volume that his heart was not able to really pump anything. When he was given the sedation for the surgery it was more than his heart could handle and it stopped beating. He was given CPR and resuscitated less than five minutes later. Trent was in the SICU, intubated, and heavily sedated. He would be getting a full body scan later in the day to figure out if there was an obvious reason why he coded.
1:00 pm
I was instructed by Angelique to make sure I drank a lot of water and had something to eat. I guess the stress of such an event makes them worry about the family. Angelique walked with me up to the SICU and I was allowed to see Trent and talk to him. I wasn't sure what to say except, "I'm here." His hands were tied to the bed so he wouldn't pull out his breathing tube and he had tubes and IVs everywhere. I was surprised how lonely it felt to have such a huge thing happening and not be able to talk to Trent. Up to this point I had only let a few tears slip. After a while I was left alone with Trent. I sat at his bedside and held his limp hand and sobbed. I prayed so much and so fervently. I was begging for guidance and peace. I don't really know how long I stayed there. After a while I was given a yogurt and told to drink some water with it. I needed it, I was pretty shaky. Every time I stood I had to give myself a minute to make sure that my legs were going to support me.
Sometime that afternoon the anesthesiologist who performed CPR on Trent came by to tell me more of what happened. He said that when they got to the OR they tried to get Trent on the table and he had a very difficult time making the move. They laid him flat and he immediately began gasping for air. They sat him up and put him on oxygen for several minutes. Then they gave him the sedation medication and shortly afterward, his heart rate began to drop steadily. When it reached 30 beats per minute he felt for a pulse and did not find one. He began chest compressions and continued for about four minutes. He gave Trent a shot of Epinephrine and checked for a pulse which he found. He immediately looked down Trent's throat at his heart and found it to be surrounded by a soft tissue which he described as metastatic disease. He didn't feel that he would have done anything differently and there were no mistakes made.
3:00 pm
Trent was taken for the ct scan and returned about 45 minutes later, still unresponsive.
4:30 pm
Dr. Gouw and Katie came to see me and discuss what the scan showed. The tumors in the lung looked to be slightly larger than before and there are tumors on each side of the heart in between the atrium. The hematomas were more fibrous in Dr. Gouw's opinion and may be more involved than we thought. They were very empathetic and laid out the prognosis. Trent likely has weeks to months to live. If the chemo drugs work, it might extend a few months but would certainly not be a year. However, Dr. Gouw was hesitant to say that because he told us that in January too. He said he has a hard time guessing about Trent because Trent bucks the trend every time. He didn't think continuing the new chemo was a bad idea but also wanted to set Trent up with Hospice. Yuck. That word tastes bad in my mouth. Katie asked me to think of Hospice as more complete care at home and not being sent home to die. Dr. Gouw also said that he may have contributed somewhat to Trent's "dryness" in his veins by giving him Lasix. What we thought was fluid on his belly actually turned out not to be.
Dr. Carr came in and explained that because Trent is such a big guy, the weight of the fluid in the left chest cavity has basically flipped the diaphragm inside out and it is sinking into his abdomen, therefore displacing all of Trent's organs and making him look like he is retaining fluid. He gave me a similar rundown of the scans that Dr. Gouw did and gave the same prognosis. He said that because of what happened in the OR, there is not an anesthesiologist anywhere that would touch Trent with a ten foot pole, so future surgeries are not an option. He stressed that it would be important to make sure that the remainder of Trent's days were as good as they could be. He then just sat and listened to me. I cried a bunch and told him we were grateful for all he had done for Trent. He held my hand and told me how sorry he was that things didn't turn out differently. He has a special place in his heart for Trent.
7:00 pm
I stepped out to call family. I had tried to send texts earlier in the day but the service was bad and they didn't send until much later. I had the unfortunate job of telling Trent's parents the awful news. When I went back to Trent's room I was met outside by a nurse asking if I was Holly. Trent had woken up a few minutes earlier and had been writing my name on a piece of paper. I grabbed his hand and kissed his face. He had this look in his eyes like a frightened child. He had no idea what had happened and why he was tied to his bed not being able to speak. I tried to explain in basic terms what happened. I told him that he had died on the operating table and was brought back. I asked him if he chose to come back and he nodded his head yes. He pointed his finger as if to say, "There's more." He doesn't remember that at all though. He kept gesturing with his hands over and over like, "What is going on?" I quickly realized that everything I was saying to him he immediately forgot. He must have written the question, "What happened?" about 50 times over the next few hours. He filled up 12 sheets of paper doing that. Intermittently he would write, "I love you." I saved four pages of his writing and the nurse threw away the others.
One nurse was doing the normal examination, squeeze my hand, push against my fingers with your toes, etc. When she asked him to squeeze her hand he squeezed and wouldn't let go until she said please. Then she asked him to push against her hands with his feet. He did so and trapped her hands between his feet and the bed. Even while he was not completely lucid he was teasing. I have such sympathy for his little brothers! :)
10:30 pm
I sat down and pulled out the iPad to read the scriptures to find some peace. I guess I was hoping for a similar experience to the one I had in church a few weeks ago. I was flipping through chapters in the Doctrine and Covenants. I noticed that I kept coming across the phrase, "and lo, I come quickly." Somehow that made me feel better. No matter what happens, this life is a blip on the radar and soon enough Christ will return to the earth to relieve us all of our suffering.
I had just laid down for the night when a nurse asked if I had eaten anything for dinner. I hadn't and didn't think I needed it. John, the CNA immediately left the room and came back with a turkey sandwich and a sprite. He gently but firmly said, "Get up, you are going to eat this." I didn't have the energy to argue so I did what I was told. He sat down beside me and took my hand in his. I immediately started to sob. He pulled me into his arms and stroked my hair while I cried. I told him I was worried about my kids and how I was going to tell them. He asked if I was LDS and offered to give me a blessing. I jumped at that chance. Within a few minutes he was back with two other male nurses to give me a blessing of strength to endure the trials in the days ahead and to find the words to help my children.
Friday, 12:00 am
Trent was still wanting to write the same question every couple of minutes. I was exhausted and just wanted some rest. The nurses kept telling Trent to leave me alone and go to sleep. He would tap repeatedly on his bed and snap his fingers at me until I came to his bedside to watch him write his question. I was sobbing by this point, I had answered this question a million times before but he would immediately forget. I was begging him to stop, I couldn't keep saying it. When I looked in his eyes I knew he knew I was upset but it was like it didn't really register. Just when I thought he was going to stop, I would hear the tapping on the bed again. I tried to ignore him but I knew that in that very small moment he was aware of what he needed and that I wasn't there to answer him. I couldn't bear to have him think I was abandoning him so I would get up and go through the same thing over and over. The nurse ordered a pair of earplugs for me and sent me to bed.
4:30 am
I heard Trent calling my name in a gaspy, strained voice. I jumped up and ran to his bed. The nurse got there just as I did and swore then slammed the CODE button. Trent had pulled or tongued his breathing tube out. The room was immediately filled with nurses and doctors. They put the oxygen mask on Trent and got him breathing. They untied his hands but he kept pulling the mask off so they finally just put a cannula in his nose. Then the questions began. Now instead of writing, "What happened?", he asked me over and over. I sat and held his hand and tried to give him only the information he really needed.
5:30 am
John came in and was helping Trent. He could see how agitated he was and asked if he would like a blessing. Trent said yes and within a couple of minutes he was anointed and given a blessing of comfort.
7:00 am
Trent was frustrated and wanted to go home. Because he had extubated himself there really wasn't a reason to keep him there. Preparations were being made for Hospice and it was suggested that he should be taken home in an ambulance. I decided to ride with him and have my brother bring our suburban home. We had to sign a POLST, basically an advanced directive for the ride home.
10:00 am
The social worker came back and asked if Trent would like a blessing before we left. I told her that he had already received one from John earlier. One of the nurses asked if I meant Jake. No, it was definitely John, but nobody seemed to know who John was. I tried to describe him but no one knew who he was. Interesting...
Then came the string of nurses and doctors who came in to tell Trent how much they respected and honored Trent for the valiant fight he had put up. One of our first nurses, Sarah, (she helped him with a horrible episode with gas over two years ago) came to see him. She hugged us both and told us how much she loved Trent and expressed her regret for the situation.
Trent's port was accessed for a continuous morphine drip. I told them we had a difficult time with it a couple of days prior but this time it worked beautifully. The EMTs arrived with the stretcher for Trent. He asked them if we could stop on the way home for a Blizzard from Dairy Queen. Then he thought he might like some chicken too and asked if we could stop at Chic-Fil-A too. Oh brother.
11:30 am
We arrived home and were met by the Hospice nurse. Trent could not remember any of what had happened and was very surprised to learn that he was on Hospice care. This made it a little uncomfortable for the nurse and myself as I tried to explain things for the millionth time. We finally got him settled down and tried to relax a little. I laid down on the couch and closed my eyes. I was asleep before my eyes finished closing. I awoke a short time later and just watched Trent breathe. He has suffered so much! He has sacrificed everything to fight this cancer. His body is scarred and broken and tired. His spirit is strong and his determination to continue to fight has not wavered but I don't know if his body is up to it.
5:00 pm
I took four of our kids, (Zach was at Scout Camp), to tour the new Brigham City Temple. My dad has had the opportunity to oversee the openhouse and dedication planning. He was the one to give us the tour that night. I really wanted to be in a dedicated temple with Trent and was not really expecting anything but to be impressed by the beauty of the building. I loved having the kids there with me and found myself really missing Zach and Trent. As we walked from room to room I was reminded how lucky I am to be sealed to Trent and our children eternally. No matter what happens here on earth, if I live up to my covenants, my family is mine forever. Cancer can't take that away from me.
9:00 pm
We sat the kids down and gave them the "light" version of the previous days' events. Most of it was probably news to Trent to because he still wasn't remembering anything. I told them that it was okay to still pray that Dad was healed but that we also needed to submit our will to Heavenly Father's and trust that we would be taken care of.
10:00 pm
Trent and I laid in bed and talked about everything under the sun. We cried and prayed and cried some more. Okay, I did most of the crying because Trent was still a bit out of it. I told him that I have lived for him and loved him from the moment I first saw him in Broulim's on December 9, 1994. He thanked me for always being by his side and being his strength. I kept thinking about all the things he would miss, all the things I would watch our children do and not have him there beside me. It really made me feel like I wanted to vomit. It is devastating to think of Trent dying but I don't want him to suffer anymore.
We tried to discuss funeral plans again. There are just a few details I wanted to be sure about. After a while we gave up. That will have to come later. We slept for a few hours holding hands which is just about the only contact I can have with out hurting him.
Saturday 4:30 am
Trent was frantic to get Zach home. He felt like his time was really short and needed to have all of our kids here. By the looks of him, I thought he was right. I took the opportunity to tell him everything I needed to say and then cried a bunch more. I can't stand the thought of Jonathan not knowing how fun Trent is. All he will remember is a sick daddy. That breaks my heart.
6:45 am
I called the wife of Zach's Scout Master so she could relay the message that Zach needed to be home ASAP. We then called Trent's mom and dad. After those calls were finished my dad came down. Trent was pretty confused by now. His vision is blurry and doubled because of the morphine. He kept saying to my dad that there was two of him. I jokingly said it was his evil twin. Trent reached for my dad's face and said, "No, this is the good one." Then my mom came down and told Trent how much they had enjoyed having our family in their home and how much she admired and respected Trent for his courage.
When Jarom woke up he came in and I told him that Dad probably didn't have much longer and if would like to tell him anything it would be good to do it now. Trent told him how much he loved him and how proud he was of him. Jarom couldn't really deal with all that then so he left and went to work outside.
Mallory and Megan came in shortly after that. I explained the situation to them. Mallory crawled up in my lap and cried. I asked Megan if she needed to say anything. Megan has been void of any outward emotion the whole two years. As soon as I asked her if she needed to say anything she burst into tears and said she didn't want us to give up yet. She mentioned the blessings and said again that we couldn't give up. She fell into my arms and we all sobbed. I looked up to see Jarom come running over to the window and watch us as we cried. I tried to explain that we weren't giving up but submitting to the will of the Lord. If He wants Trent to live, he will live. Mallory made it her job to make sure that everyone had tissues and we dubbed her the Tissue Queen. I asked Megan what her favorite memories of Dad were. She said she had lots of good memories. We talked about jumping in the suburban and driving to Texas on the spur of the moment and other fun things we have done. I told her how smitten Trent was with her when she was born and called her his 'lil' boneca' which means doll in Portuguese. Mallory's favoritve thing about Trent was that he was strong and would never give up. She remembered how he played "Hide the Ring" with her when we went to Mount Rushmore.
Then came Jonathan. Sweet little Jonathan. I took him in my arms and told him that daddy was probably going to get to live with Jesus soon and we wouldn't get to see him anymore. Mallory was still there and she started to cry a little bit when I said that. Jonathan said, "It's okay Mallory, he'll be back in a minute." I asked Jonathan what his favorite memory of Daddy was. He said sitting on his lap watching TV. A few minutes later he walked up to Trent's side and said, "You are going to live with Heavenly Father but not for a really long time."
10:30 am
Jarom finally dared come back into our room. He cried a few tears but was pretty quiet about it. We all sat there on the floor and cried off and on. Mallory was dutifully fulfilling her charge as Tissue Queen. Jonathan turned to me and in an anxious voice said, "Mom, my tears are falling out!"
We were all wanting Zach there so badly. I was getting updates as to where he was and how long it would be.
12:30 pm
Finally Zach arrived. When I saw him my tears started up again. Trent had been very anxious about having Zach with us. I asked him if he knew what was going on and he said his leader had told him that it was bad. I explained a little bit and he started to cry. He quickly went down to Trent's room to see him. Trent was trying to be excited about Scout Camp and Zach's experience. That helped us all to have a distraction for a minute.
We pulled out the scriptures and read a few different verses, trying to explain to the kids that even though Trent has been blessed to live, that doesn't always happen. We still have to have faith and be accepting of the Lord's will. We decided to have a family prayer and tell the Lord exactly how we felt. Just then my dad popped his head around the corner and knelt to join us. I said the prayer and told Heavenly Father how much we wanted Trent to be healed and how much faith we had in the blessings that he had been given. I also told him that we would be faithful no matter what the outcome and that we were submitting our will to His, but just to be clear...we want Trent to LIVE. After the prayer we all felt much better.
Mom and Dad brought lunch down to us and we had a little picnic on the floor. Trent sat up and ate his whole meal. Then he announced that he wanted a Blizzard. He was still craving a Blizzard but didn't remember that he had wanted one the day before! When I told him that he laughed and decided we all needed Blizzards.
2:30 pm
The Hospice nurse came and checked him out. All vitals signs were okay but not fabulous. She spent quite a bit of time with me answering all my questions. By the time she left, everyone had dispersed a little bit to their own activities. Mallory and Jonathan spent much of the afternoon coloring on the floor in our room. Everyone stayed close but I think they all needed just a little breathing room.
6:00 pm
Trent was being a little crazy again. I was thinking the bolus dose of the morphine was just a little too much for Trent. He asked me to sit down in front of him and commenced a speech, like he was speaking to hundreds of people, about the dynamics of a relationship. He said, "You are the wife and that guy is the husband." He talked about the dynamics of joining two families. That was yucky to hear so I grabbed his hand and said, "I am YOUR wife and you are my husband."
Right around this time Mallory and Jonathan were needing a little help fixing the Easy Bake Oven, which I did, and sent them off to create a masterpiece. Trent told me how nice it was of him to give the kids his Easy Bake Oven and that they should take special care of it because it was really his. Uh, okay...Trent loves to bake but I can guarantee it has never been in an Easy Bake Oven.
6:30 pm
Trent remembered the Blizzards again, so I packed up a couple kids and my brother, Josh, and we went to Dairy Queen. Never again will that happen. I could have bought three months worth of ice cream and toppings with the amount of money I spent!
7:30 pm
Trent had been up in his chair trying to watch the RSL game but became too uncomfortable so he went back to bed. We enjoyed a low key evening and the kids just kind of hung around us. At different times three of the kids came to me and said they didn't think Dad was going to die. They felt like he was going to live. You cannot imagine how I grabbed onto that! I am fully aware of the reality but to still have hope is very healing.
I gave all the boys haircuts and got the little kids bathed and ready for bed. What a normal thing to do! It was nice to have something that needed to be done that could take my mind off things for a while.
When I went downstairs Trent grabbed me and kissed me like a man kisses his wife. WOW! That hasn't happened for awhile! He was doing pretty well. Actually much better than in the morning.
Sunday 3:00 pm
He had only one little episode last night. He had a little pain so we gave him a bolus dose of morphine. That makes him a little crazy. The hospice nurse came again today and she checked him over. He is actually improving. That is good to hear. We will take any little blessing we can get.
This is the trial of our lives but all we can do is take it one day at a time.
Thursday 7:30 am
We got up to got to SLC for the surgery. As we were heading out the door, my dad offered a blessing to Trent. He of course accepted gratefully. He was pretty 'iffy' that morning and needed all the strength and reassurance he could get. Once we got to the Hunstman they rushed us right in to pre-op. Apparently they had been waiting for us. The anesthesiologists came in and discussed sedation for the surgery. At first we were thinking a MAC (monitored anesthesia care) was the best option. It is more like a heavy local anesthesia. After seeing how big of a hematoma Dr. Carr would be working on and noting that Trent has difficulty breathing while laying flat, they decided that a general anesthesia was the better choice. Dr. Carr came in and went over the details of the surgery and marked Trent's chest.
9:30 am
12:30 pm
Dr. Carr and a woman that I assumed correctly was a social worker, came out and gestured for me to meet them in the consult room. I knew that wasn't good if he brought along back up. Angelique, another social worker, came bursting through the door and said she had run all the way over when she heard about Trent. When I sat down Dr. Carr said, "Wow, so, uh things didn't go exactly as planned. Trent actually coded on the table before we could do the surgery." He went on to explain that he thought that Trent had such low blood volume that his heart was not able to really pump anything. When he was given the sedation for the surgery it was more than his heart could handle and it stopped beating. He was given CPR and resuscitated less than five minutes later. Trent was in the SICU, intubated, and heavily sedated. He would be getting a full body scan later in the day to figure out if there was an obvious reason why he coded.
1:00 pm
Sometime that afternoon the anesthesiologist who performed CPR on Trent came by to tell me more of what happened. He said that when they got to the OR they tried to get Trent on the table and he had a very difficult time making the move. They laid him flat and he immediately began gasping for air. They sat him up and put him on oxygen for several minutes. Then they gave him the sedation medication and shortly afterward, his heart rate began to drop steadily. When it reached 30 beats per minute he felt for a pulse and did not find one. He began chest compressions and continued for about four minutes. He gave Trent a shot of Epinephrine and checked for a pulse which he found. He immediately looked down Trent's throat at his heart and found it to be surrounded by a soft tissue which he described as metastatic disease. He didn't feel that he would have done anything differently and there were no mistakes made.
3:00 pm
Trent was taken for the ct scan and returned about 45 minutes later, still unresponsive.
4:30 pm
Dr. Gouw and Katie came to see me and discuss what the scan showed. The tumors in the lung looked to be slightly larger than before and there are tumors on each side of the heart in between the atrium. The hematomas were more fibrous in Dr. Gouw's opinion and may be more involved than we thought. They were very empathetic and laid out the prognosis. Trent likely has weeks to months to live. If the chemo drugs work, it might extend a few months but would certainly not be a year. However, Dr. Gouw was hesitant to say that because he told us that in January too. He said he has a hard time guessing about Trent because Trent bucks the trend every time. He didn't think continuing the new chemo was a bad idea but also wanted to set Trent up with Hospice. Yuck. That word tastes bad in my mouth. Katie asked me to think of Hospice as more complete care at home and not being sent home to die. Dr. Gouw also said that he may have contributed somewhat to Trent's "dryness" in his veins by giving him Lasix. What we thought was fluid on his belly actually turned out not to be.
Dr. Carr came in and explained that because Trent is such a big guy, the weight of the fluid in the left chest cavity has basically flipped the diaphragm inside out and it is sinking into his abdomen, therefore displacing all of Trent's organs and making him look like he is retaining fluid. He gave me a similar rundown of the scans that Dr. Gouw did and gave the same prognosis. He said that because of what happened in the OR, there is not an anesthesiologist anywhere that would touch Trent with a ten foot pole, so future surgeries are not an option. He stressed that it would be important to make sure that the remainder of Trent's days were as good as they could be. He then just sat and listened to me. I cried a bunch and told him we were grateful for all he had done for Trent. He held my hand and told me how sorry he was that things didn't turn out differently. He has a special place in his heart for Trent.
7:00 pm
I stepped out to call family. I had tried to send texts earlier in the day but the service was bad and they didn't send until much later. I had the unfortunate job of telling Trent's parents the awful news. When I went back to Trent's room I was met outside by a nurse asking if I was Holly. Trent had woken up a few minutes earlier and had been writing my name on a piece of paper. I grabbed his hand and kissed his face. He had this look in his eyes like a frightened child. He had no idea what had happened and why he was tied to his bed not being able to speak. I tried to explain in basic terms what happened. I told him that he had died on the operating table and was brought back. I asked him if he chose to come back and he nodded his head yes. He pointed his finger as if to say, "There's more." He doesn't remember that at all though. He kept gesturing with his hands over and over like, "What is going on?" I quickly realized that everything I was saying to him he immediately forgot. He must have written the question, "What happened?" about 50 times over the next few hours. He filled up 12 sheets of paper doing that. Intermittently he would write, "I love you." I saved four pages of his writing and the nurse threw away the others.
One nurse was doing the normal examination, squeeze my hand, push against my fingers with your toes, etc. When she asked him to squeeze her hand he squeezed and wouldn't let go until she said please. Then she asked him to push against her hands with his feet. He did so and trapped her hands between his feet and the bed. Even while he was not completely lucid he was teasing. I have such sympathy for his little brothers! :)
10:30 pm
I sat down and pulled out the iPad to read the scriptures to find some peace. I guess I was hoping for a similar experience to the one I had in church a few weeks ago. I was flipping through chapters in the Doctrine and Covenants. I noticed that I kept coming across the phrase, "and lo, I come quickly." Somehow that made me feel better. No matter what happens, this life is a blip on the radar and soon enough Christ will return to the earth to relieve us all of our suffering.
I had just laid down for the night when a nurse asked if I had eaten anything for dinner. I hadn't and didn't think I needed it. John, the CNA immediately left the room and came back with a turkey sandwich and a sprite. He gently but firmly said, "Get up, you are going to eat this." I didn't have the energy to argue so I did what I was told. He sat down beside me and took my hand in his. I immediately started to sob. He pulled me into his arms and stroked my hair while I cried. I told him I was worried about my kids and how I was going to tell them. He asked if I was LDS and offered to give me a blessing. I jumped at that chance. Within a few minutes he was back with two other male nurses to give me a blessing of strength to endure the trials in the days ahead and to find the words to help my children.
Friday, 12:00 am
Trent was still wanting to write the same question every couple of minutes. I was exhausted and just wanted some rest. The nurses kept telling Trent to leave me alone and go to sleep. He would tap repeatedly on his bed and snap his fingers at me until I came to his bedside to watch him write his question. I was sobbing by this point, I had answered this question a million times before but he would immediately forget. I was begging him to stop, I couldn't keep saying it. When I looked in his eyes I knew he knew I was upset but it was like it didn't really register. Just when I thought he was going to stop, I would hear the tapping on the bed again. I tried to ignore him but I knew that in that very small moment he was aware of what he needed and that I wasn't there to answer him. I couldn't bear to have him think I was abandoning him so I would get up and go through the same thing over and over. The nurse ordered a pair of earplugs for me and sent me to bed.
4:30 am
5:30 am
John came in and was helping Trent. He could see how agitated he was and asked if he would like a blessing. Trent said yes and within a couple of minutes he was anointed and given a blessing of comfort.
7:00 am
Trent was frustrated and wanted to go home. Because he had extubated himself there really wasn't a reason to keep him there. Preparations were being made for Hospice and it was suggested that he should be taken home in an ambulance. I decided to ride with him and have my brother bring our suburban home. We had to sign a POLST, basically an advanced directive for the ride home.
10:00 am
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| Angelique and Trent |
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| Getting ready for the big ride. |
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| Trent air kissing me in the ambulance bay. |
Then came the string of nurses and doctors who came in to tell Trent how much they respected and honored Trent for the valiant fight he had put up. One of our first nurses, Sarah, (she helped him with a horrible episode with gas over two years ago) came to see him. She hugged us both and told us how much she loved Trent and expressed her regret for the situation.
Trent's port was accessed for a continuous morphine drip. I told them we had a difficult time with it a couple of days prior but this time it worked beautifully. The EMTs arrived with the stretcher for Trent. He asked them if we could stop on the way home for a Blizzard from Dairy Queen. Then he thought he might like some chicken too and asked if we could stop at Chic-Fil-A too. Oh brother.
11:30 am
We arrived home and were met by the Hospice nurse. Trent could not remember any of what had happened and was very surprised to learn that he was on Hospice care. This made it a little uncomfortable for the nurse and myself as I tried to explain things for the millionth time. We finally got him settled down and tried to relax a little. I laid down on the couch and closed my eyes. I was asleep before my eyes finished closing. I awoke a short time later and just watched Trent breathe. He has suffered so much! He has sacrificed everything to fight this cancer. His body is scarred and broken and tired. His spirit is strong and his determination to continue to fight has not wavered but I don't know if his body is up to it.
5:00 pm
9:00 pm
We sat the kids down and gave them the "light" version of the previous days' events. Most of it was probably news to Trent to because he still wasn't remembering anything. I told them that it was okay to still pray that Dad was healed but that we also needed to submit our will to Heavenly Father's and trust that we would be taken care of.
10:00 pm
Trent and I laid in bed and talked about everything under the sun. We cried and prayed and cried some more. Okay, I did most of the crying because Trent was still a bit out of it. I told him that I have lived for him and loved him from the moment I first saw him in Broulim's on December 9, 1994. He thanked me for always being by his side and being his strength. I kept thinking about all the things he would miss, all the things I would watch our children do and not have him there beside me. It really made me feel like I wanted to vomit. It is devastating to think of Trent dying but I don't want him to suffer anymore.
We tried to discuss funeral plans again. There are just a few details I wanted to be sure about. After a while we gave up. That will have to come later. We slept for a few hours holding hands which is just about the only contact I can have with out hurting him.
Saturday 4:30 am
Trent was frantic to get Zach home. He felt like his time was really short and needed to have all of our kids here. By the looks of him, I thought he was right. I took the opportunity to tell him everything I needed to say and then cried a bunch more. I can't stand the thought of Jonathan not knowing how fun Trent is. All he will remember is a sick daddy. That breaks my heart.
6:45 am
When Jarom woke up he came in and I told him that Dad probably didn't have much longer and if would like to tell him anything it would be good to do it now. Trent told him how much he loved him and how proud he was of him. Jarom couldn't really deal with all that then so he left and went to work outside.
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| Daddy holding his girls' hands. |
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| Mallory, Megan, and Daddy |
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| Jonathan giving Daddy more oxygen through the incentive spirometer. |
10:30 am
We were all wanting Zach there so badly. I was getting updates as to where he was and how long it would be.
12:30 pm
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| Mallory, Megan, Jarom, Jonny, Zach, and Trent |
We pulled out the scriptures and read a few different verses, trying to explain to the kids that even though Trent has been blessed to live, that doesn't always happen. We still have to have faith and be accepting of the Lord's will. We decided to have a family prayer and tell the Lord exactly how we felt. Just then my dad popped his head around the corner and knelt to join us. I said the prayer and told Heavenly Father how much we wanted Trent to be healed and how much faith we had in the blessings that he had been given. I also told him that we would be faithful no matter what the outcome and that we were submitting our will to His, but just to be clear...we want Trent to LIVE. After the prayer we all felt much better.
2:30 pm
The Hospice nurse came and checked him out. All vitals signs were okay but not fabulous. She spent quite a bit of time with me answering all my questions. By the time she left, everyone had dispersed a little bit to their own activities. Mallory and Jonathan spent much of the afternoon coloring on the floor in our room. Everyone stayed close but I think they all needed just a little breathing room.
6:00 pm
Trent was being a little crazy again. I was thinking the bolus dose of the morphine was just a little too much for Trent. He asked me to sit down in front of him and commenced a speech, like he was speaking to hundreds of people, about the dynamics of a relationship. He said, "You are the wife and that guy is the husband." He talked about the dynamics of joining two families. That was yucky to hear so I grabbed his hand and said, "I am YOUR wife and you are my husband."
Right around this time Mallory and Jonathan were needing a little help fixing the Easy Bake Oven, which I did, and sent them off to create a masterpiece. Trent told me how nice it was of him to give the kids his Easy Bake Oven and that they should take special care of it because it was really his. Uh, okay...Trent loves to bake but I can guarantee it has never been in an Easy Bake Oven.
6:30 pm
Trent remembered the Blizzards again, so I packed up a couple kids and my brother, Josh, and we went to Dairy Queen. Never again will that happen. I could have bought three months worth of ice cream and toppings with the amount of money I spent!
7:30 pm
Trent had been up in his chair trying to watch the RSL game but became too uncomfortable so he went back to bed. We enjoyed a low key evening and the kids just kind of hung around us. At different times three of the kids came to me and said they didn't think Dad was going to die. They felt like he was going to live. You cannot imagine how I grabbed onto that! I am fully aware of the reality but to still have hope is very healing.
I gave all the boys haircuts and got the little kids bathed and ready for bed. What a normal thing to do! It was nice to have something that needed to be done that could take my mind off things for a while.
When I went downstairs Trent grabbed me and kissed me like a man kisses his wife. WOW! That hasn't happened for awhile! He was doing pretty well. Actually much better than in the morning.
Sunday 3:00 pm
He had only one little episode last night. He had a little pain so we gave him a bolus dose of morphine. That makes him a little crazy. The hospice nurse came again today and she checked him over. He is actually improving. That is good to hear. We will take any little blessing we can get.
This is the trial of our lives but all we can do is take it one day at a time.
Tuesday, August 14, 2012
Surgery No.8
Yesterday we went to see Dr. Gouw. Trent was uncomfortable and very tired. We both were. It had been a rough night and we were feeling it. We had to have labs done before we met with Dr. Gouw but Trent's port was not pulling blood. It would flush just fine but when the nurse pulled back all she got was the saline she flushed with. So she put TPA in it to break up what we assumed was a small clot. It takes a couple of hours to work so she drew blood from his arm and we went to see Dr. Gouw.
The Lasix that Trent had been taking for three days already had not really done its job. Actually Trent's legs were more swollen than when he started the Lasix and his abdomen was just as tight. When Dr. Gouw saw that he ordered another week on Lasix and added Spironolactone. The two drugs together will hopefully pull all the excess water from Trent's body. Dr. Gouw also suggested a paracentesis, a procedure in which they use a needle to pull excess fluid from the abdomen, guided by ultrasound. Because the hematomas are causing so much trouble, Dr. Gouw also suggested having Dr. Carr take another look at them to possibly surgically remove them again. Hopefully putting out these two fires will make it a lot easier for Trent to breathe.
We talked about the other side effects from the Pazopinib that Trent is experiencing. There really are very few. His feet are peeling and he has been tired but that is all that can really be attributed to the new medicine. I had Dr. Gouw feel the area where the sarcoma was growing again on his ribs. It used to be the size of a shooter marble and very easy to feel. It is now barely detectable but it could also be being masked by all the fluid on Trent's abdomen. I am hoping that it really is smaller and that the medicine is working.
After the visit with Dr. Gouw we went back to the lab to see if the medicine worked magic in his port. Unfortunately it did not. The nurse decided to leave the little bit of TPA in his port to see if more time would help. Eventually the medicine metabolizes so it won't be harmful to his body. We will probably try the TPA one more time in the next few days before they have to insert a dye and scan to see if the catheter is still in the right spot.
Last night was another very difficult night. Trent was very anxious and needed some soft music, specifically a CD of religious lullabies that was nowhere to be found. I looked in every conceivable place and couldn't find it. Finally I found the case but no CD. Ugh! I remembered I had uploaded it in iTunes. It was magic! As soon as I pushed play, Trent was calmer. By the second song he was much, much better. Crisis averted this time.
Today I got a call from Katie and Jan. They informed me that Trent is first on the schedule for Dr. Carr in the OR on Thursday to drain the hematomas. They were having some scheduling problems trying to get a radiologist from the U to come do the paracentesis while Trent is under sedation. But it turns out that Dr. Carr is also a radiologist and can do the procedure himself. That is convenient isn't it? I talked with Dr. Carr and discussed maybe putting in drains to keep the problem from recurring. He is hesitant because that is more stuff that I will have to take care of. However, I have done that before and know exactly how to do it. Dr. Carr will make that decision during surgery. He asked if I had anymore questions and I told him that I did but that he probably couldn't answer them until surgery. Half in jest, I told him I would love to be in the room so I could peek over his shoulder. He is going to see about getting a video done for me. I know it is sick, but at least then I know what is going on and what questions I should be asking.
In the meantime I have turned my focus to more homemaking things. In my attempt to be domestic again I made suckers for Jarom's cub scout den today. I misread the thermometer and they turned out like taffy. I tried again and somehow I burned the next batch. I really think the thermometer is broken. Anyway, right after I poured the liquid into the molds, Mallory stubbed her toe on the cabinets and fell into the suckers. She burned her fingers so badly! I was worried that we were headed to the ER but as I put her fingers in cold water it immediately hardened the candy on her fingers and it came off without taking her skin off too. I think we were pretty lucky with that one. Between her and Trent I have probably filled ten ice packs today.
I have been enjoying unemployment but am starting to feel the urgency of getting work. I have loved spending time with the kids and being more available for Trent. I have even done a couple of crafts (gasp) and it makes me so happy! I feel a little more like myself and that has been nice. All I ever wanted was to be a wife and mother and the last few years I haven't really gotten to do that. I feel like I am more nurse and employee. I have to come to terms with the fact that my life is not going to be what I wanted it to be and that has to be okay. I have to trust that whatever my life ends up being is what was meant for me and will ultimately be better than anything I could have planned.
The Lasix that Trent had been taking for three days already had not really done its job. Actually Trent's legs were more swollen than when he started the Lasix and his abdomen was just as tight. When Dr. Gouw saw that he ordered another week on Lasix and added Spironolactone. The two drugs together will hopefully pull all the excess water from Trent's body. Dr. Gouw also suggested a paracentesis, a procedure in which they use a needle to pull excess fluid from the abdomen, guided by ultrasound. Because the hematomas are causing so much trouble, Dr. Gouw also suggested having Dr. Carr take another look at them to possibly surgically remove them again. Hopefully putting out these two fires will make it a lot easier for Trent to breathe.
We talked about the other side effects from the Pazopinib that Trent is experiencing. There really are very few. His feet are peeling and he has been tired but that is all that can really be attributed to the new medicine. I had Dr. Gouw feel the area where the sarcoma was growing again on his ribs. It used to be the size of a shooter marble and very easy to feel. It is now barely detectable but it could also be being masked by all the fluid on Trent's abdomen. I am hoping that it really is smaller and that the medicine is working.
After the visit with Dr. Gouw we went back to the lab to see if the medicine worked magic in his port. Unfortunately it did not. The nurse decided to leave the little bit of TPA in his port to see if more time would help. Eventually the medicine metabolizes so it won't be harmful to his body. We will probably try the TPA one more time in the next few days before they have to insert a dye and scan to see if the catheter is still in the right spot.
Last night was another very difficult night. Trent was very anxious and needed some soft music, specifically a CD of religious lullabies that was nowhere to be found. I looked in every conceivable place and couldn't find it. Finally I found the case but no CD. Ugh! I remembered I had uploaded it in iTunes. It was magic! As soon as I pushed play, Trent was calmer. By the second song he was much, much better. Crisis averted this time.
Today I got a call from Katie and Jan. They informed me that Trent is first on the schedule for Dr. Carr in the OR on Thursday to drain the hematomas. They were having some scheduling problems trying to get a radiologist from the U to come do the paracentesis while Trent is under sedation. But it turns out that Dr. Carr is also a radiologist and can do the procedure himself. That is convenient isn't it? I talked with Dr. Carr and discussed maybe putting in drains to keep the problem from recurring. He is hesitant because that is more stuff that I will have to take care of. However, I have done that before and know exactly how to do it. Dr. Carr will make that decision during surgery. He asked if I had anymore questions and I told him that I did but that he probably couldn't answer them until surgery. Half in jest, I told him I would love to be in the room so I could peek over his shoulder. He is going to see about getting a video done for me. I know it is sick, but at least then I know what is going on and what questions I should be asking.
In the meantime I have turned my focus to more homemaking things. In my attempt to be domestic again I made suckers for Jarom's cub scout den today. I misread the thermometer and they turned out like taffy. I tried again and somehow I burned the next batch. I really think the thermometer is broken. Anyway, right after I poured the liquid into the molds, Mallory stubbed her toe on the cabinets and fell into the suckers. She burned her fingers so badly! I was worried that we were headed to the ER but as I put her fingers in cold water it immediately hardened the candy on her fingers and it came off without taking her skin off too. I think we were pretty lucky with that one. Between her and Trent I have probably filled ten ice packs today.
I have been enjoying unemployment but am starting to feel the urgency of getting work. I have loved spending time with the kids and being more available for Trent. I have even done a couple of crafts (gasp) and it makes me so happy! I feel a little more like myself and that has been nice. All I ever wanted was to be a wife and mother and the last few years I haven't really gotten to do that. I feel like I am more nurse and employee. I have to come to terms with the fact that my life is not going to be what I wanted it to be and that has to be okay. I have to trust that whatever my life ends up being is what was meant for me and will ultimately be better than anything I could have planned.
Friday, August 10, 2012
Lookin' For the Corner
Trent has been trying for the last week to find the ever elusive "corner" to turn. He has been nauseous and had difficulty breathing. He has a difficult time sleeping because he has so much fluid in his abdomen that when he lays on his back he feels like he is suffocating. When he lays on his left side it makes his hip area burn because there is no muscle to lay on. He can't lay on his right side at all because of the 20 pounds of fluid in his chest making it nearly impossible to breathe. We have tried playing a cd with soft music that is supposed to help him sleep but the music doesn't really have an end and it bothers Trent. Last night I read the Ensign to him until my mouth was too dry to continue. I finally played a conference talk on the iPad and it put me right to sleep. :) Oops. Trent had to wake me up to tell me that the talk was over and to put the iPad away.
This morning he said he slept better but was still up every few minutes trying to find a comfortable position. I decided to call Dr. Carr and see if we could do Lasix to get some of the fluid out of Trent's abdomen and hopefully make breathing and sleeping a little easier. Dr. Carr said that was a good idea. He said that instead of taking the giant potassium pill that usually accompanies Lasix, we are going to have Trent eat a bunch of watermelon and bananas. Lucky him! We talked about the hematomas on Trent's chest. They have been growing rapidly and are quite large now. We have been icing them and using essential oils but I read that compression could help as well. We are going to try wrapping his chest with an ace bandage to see if that will help. I know the biggest factor is time but it is difficult to not see any improvement there and it would be good to have them gone. Hopefully we won't need to have a drain put in. I have been keeping a close eye on the sarcoma on Trent's side. It actually appears to be smaller than before. Maybe the Pazopanib is working! Who knows...but it would be great if it was working already. We meet with Dr. Gouw on Monday to see how everything is going. I called Katie, Dr. Gouw's nurse, yesterday to see about having the scheduled labs done. I was beginning to get a little concerned that Trent's liver was suffering but all the sypmtoms could be explained away by something else as well. I wanted to make sure the labs were all normal. However, since we are going to be there on Monday and the fact that last weeks' labs were totally normal, we decided to wait on the labs.
Trent is still having a difficult time mentally but we are doing all we can to boost him up a bit. We have made a goal to get him outside of the house at least every day, even if it is just to sit on the porch swing for a bit. He has really enjoyed watching the Olympics the last couple of weeks. We will have to find something else for him to watch when that is over.
I have been thinking a lot this week about how prayers are answered directly and indirectly. Last week after I lost my job I was super positive and quite frankly, relieved to be out of that job. It just wasn't the same after my boss left. But then of course, reality hit me smack in the face and the weight of our situation fell directly on my shoulders. I felt a little bit like Job from the Bible. (I know, how audacious of me to compare myself to Job...) I felt like a failure because the only thing I really had to do was keep insurance for Trent and I had failed to do that. I was feeling pretty scared and apprehensive about what the future holds for us. When we went to the Huntsman I received answers through two different people that I really needed. As I was talking to Jan, Dr. Carr's superwoman, she was telling me about her own experiences and she said, "I don't worry about things too much because I know that God will help me. He will take care of me." Shortly after that I was talking to Angelique and she said, "I firmly believe that things happen for a reason and it is likely that things will turn out even better than you had hoped." Many different people have offered their support and well wishes but those two sentiments resonated with me. I know we will not be left alone. This is just another bump in our avalanche. :) So, the job hunt goes on. I have been blessed to have several people offer suggestions and leads and ask for my resume`. I am sure the next great job is just around the corner. So for now, we are looking for the corner!
This morning he said he slept better but was still up every few minutes trying to find a comfortable position. I decided to call Dr. Carr and see if we could do Lasix to get some of the fluid out of Trent's abdomen and hopefully make breathing and sleeping a little easier. Dr. Carr said that was a good idea. He said that instead of taking the giant potassium pill that usually accompanies Lasix, we are going to have Trent eat a bunch of watermelon and bananas. Lucky him! We talked about the hematomas on Trent's chest. They have been growing rapidly and are quite large now. We have been icing them and using essential oils but I read that compression could help as well. We are going to try wrapping his chest with an ace bandage to see if that will help. I know the biggest factor is time but it is difficult to not see any improvement there and it would be good to have them gone. Hopefully we won't need to have a drain put in. I have been keeping a close eye on the sarcoma on Trent's side. It actually appears to be smaller than before. Maybe the Pazopanib is working! Who knows...but it would be great if it was working already. We meet with Dr. Gouw on Monday to see how everything is going. I called Katie, Dr. Gouw's nurse, yesterday to see about having the scheduled labs done. I was beginning to get a little concerned that Trent's liver was suffering but all the sypmtoms could be explained away by something else as well. I wanted to make sure the labs were all normal. However, since we are going to be there on Monday and the fact that last weeks' labs were totally normal, we decided to wait on the labs.
Trent is still having a difficult time mentally but we are doing all we can to boost him up a bit. We have made a goal to get him outside of the house at least every day, even if it is just to sit on the porch swing for a bit. He has really enjoyed watching the Olympics the last couple of weeks. We will have to find something else for him to watch when that is over.
I have been thinking a lot this week about how prayers are answered directly and indirectly. Last week after I lost my job I was super positive and quite frankly, relieved to be out of that job. It just wasn't the same after my boss left. But then of course, reality hit me smack in the face and the weight of our situation fell directly on my shoulders. I felt a little bit like Job from the Bible. (I know, how audacious of me to compare myself to Job...) I felt like a failure because the only thing I really had to do was keep insurance for Trent and I had failed to do that. I was feeling pretty scared and apprehensive about what the future holds for us. When we went to the Huntsman I received answers through two different people that I really needed. As I was talking to Jan, Dr. Carr's superwoman, she was telling me about her own experiences and she said, "I don't worry about things too much because I know that God will help me. He will take care of me." Shortly after that I was talking to Angelique and she said, "I firmly believe that things happen for a reason and it is likely that things will turn out even better than you had hoped." Many different people have offered their support and well wishes but those two sentiments resonated with me. I know we will not be left alone. This is just another bump in our avalanche. :) So, the job hunt goes on. I have been blessed to have several people offer suggestions and leads and ask for my resume`. I am sure the next great job is just around the corner. So for now, we are looking for the corner!
Friday, August 3, 2012
Happy Anniversary to Us!
Today is our 17th anniversary. The last two years we have celebrated our anniversary at the Huntsman, this year we are home, but Trent is too sick to do anything. We had great plans to have a quick bite out and maybe catch a movie, but no such luck. That's okay though, we can celebrate on Monday hopefully.
Trent seems to be a little better than last week. I think he caught a bug when my family was here visiting and he paid the price for about 10 days. Because of that it is hard to tell what the new pills are doing to him. I really don't think they are affecting him too negatively. Hopefully they are going gangbuster on the cancer!
We went down to the Huntsman on Thursday to talk with Angelique, the social worker who works with Dr. Carr. She is really good for us and is helping a ton. While we were talking to her she suggested checking out some medication CDs from the Learning Center. We chose a few and are trying them out. Last night we tried the Sleep one and it is just a bunch of weird music that Trent didn't really care for. Then I put in the 'Cancer Fighting' one and Trent liked it much more. He was getting all pumped up about beating cancer and wanted the kids to listen to it too. That might not be the best CD to listen to when we are trying to get Trent to sleep but it is a great one for the daytime! :)
While we were there, Dr. Carr did a quick examination and confirmed my suspicion that the tumor on Trent's side is growing already. We had asked to see him because the hematomas on Trent's chest are getting big again and I could also feel a lump where the tumor was removed a couple of weeks ago. Dr. Carr would prefer to let the hematomas heal themselves unless they are too painful. They are forming on the outside of Trent's ribs, right where the tumors were invading the chest wall. Those areas are weaker now and are allowing a bit of fluid to collect outside the chest wall and create a hematoma. Eventually there will be enough scar tissue there to stop the fluid collection and his body should reabsorb that fluid. That may take a while though.
I asked about the possibility of doing some radiation on the tumor on Trent's rib. Dr. Carr said that was possible if it was tender and painful. It does cause some discomfort sometimes but we are going to wait a bit and keep a close eye on it. We will probably discuss that with Dr. Gouw when we meet with him on the 13th. I would imagine that would be near the time when we start Trent on the other drug, Lapatinib. I would like to see how the two drugs do together. I also asked Dr. Carr's opinion on doing an ablation on a patient with one lung. He said he would not do it and I was not surprised. That takes away one tool that we were hoping was in our tool box. Basically, the new chemo pills have to take care of the cancer. There is no way around that.
We had labs done and waited around a bit to see if Trent was going to need blood. It turns out he doesn't but his bone marrow is being just a bit sluggish still. We will have to feed him lots of steak when we finally gets his appetite back.
This week has been one big kick in the teeth after another, and we are glad to see it end. Even though Trent has not been much for celebrating our anniversary today, I am celebrating by myself. I am the luckiest woman in the world to be married to such an amazing man. It has been 15 years of wedded bliss and 2 years of the hardest trials I could have imagined for us. We have grown closer and our marriage has become stronger. We are very different people than we were 17 years ago, even two years ago. But I believe we are better people who still share the crazy, silly love that started all those years ago. Lucky Us.
Trent seems to be a little better than last week. I think he caught a bug when my family was here visiting and he paid the price for about 10 days. Because of that it is hard to tell what the new pills are doing to him. I really don't think they are affecting him too negatively. Hopefully they are going gangbuster on the cancer!
We went down to the Huntsman on Thursday to talk with Angelique, the social worker who works with Dr. Carr. She is really good for us and is helping a ton. While we were talking to her she suggested checking out some medication CDs from the Learning Center. We chose a few and are trying them out. Last night we tried the Sleep one and it is just a bunch of weird music that Trent didn't really care for. Then I put in the 'Cancer Fighting' one and Trent liked it much more. He was getting all pumped up about beating cancer and wanted the kids to listen to it too. That might not be the best CD to listen to when we are trying to get Trent to sleep but it is a great one for the daytime! :)
While we were there, Dr. Carr did a quick examination and confirmed my suspicion that the tumor on Trent's side is growing already. We had asked to see him because the hematomas on Trent's chest are getting big again and I could also feel a lump where the tumor was removed a couple of weeks ago. Dr. Carr would prefer to let the hematomas heal themselves unless they are too painful. They are forming on the outside of Trent's ribs, right where the tumors were invading the chest wall. Those areas are weaker now and are allowing a bit of fluid to collect outside the chest wall and create a hematoma. Eventually there will be enough scar tissue there to stop the fluid collection and his body should reabsorb that fluid. That may take a while though.
I asked about the possibility of doing some radiation on the tumor on Trent's rib. Dr. Carr said that was possible if it was tender and painful. It does cause some discomfort sometimes but we are going to wait a bit and keep a close eye on it. We will probably discuss that with Dr. Gouw when we meet with him on the 13th. I would imagine that would be near the time when we start Trent on the other drug, Lapatinib. I would like to see how the two drugs do together. I also asked Dr. Carr's opinion on doing an ablation on a patient with one lung. He said he would not do it and I was not surprised. That takes away one tool that we were hoping was in our tool box. Basically, the new chemo pills have to take care of the cancer. There is no way around that.
We had labs done and waited around a bit to see if Trent was going to need blood. It turns out he doesn't but his bone marrow is being just a bit sluggish still. We will have to feed him lots of steak when we finally gets his appetite back.
This week has been one big kick in the teeth after another, and we are glad to see it end. Even though Trent has not been much for celebrating our anniversary today, I am celebrating by myself. I am the luckiest woman in the world to be married to such an amazing man. It has been 15 years of wedded bliss and 2 years of the hardest trials I could have imagined for us. We have grown closer and our marriage has become stronger. We are very different people than we were 17 years ago, even two years ago. But I believe we are better people who still share the crazy, silly love that started all those years ago. Lucky Us.
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