Entering a New Phase of Care

 Hello Everyone!  I hope this post finds you happy and well.  We are forever grateful for your prayers and faith in our behalf.  Some significant changes have occurred since my last post.

The chemotherapy I have been taking was really wearing my body down.  I was getting very tired and ended up in the hospital multiple times for infections. The adverse side effects of the chemotherapy have began to out weigh the effects on the tumors.  

So, after my latest stay at the hospital, we decided to stop this chemotherapy treatment.  Unfortunately, the doctors do not have any other ideas for me.  I have tried all the things they can recommend.  So we are leaving it up to Heavenly Father. We are hoping that the cancer will grow slowly and the tumors will grow in places that do not effect vital organs.  It was a tough decision, but being in the hospital every few weeks was not how we wanted to live.  We are focusing now on quality of life instead of quantity of life.  We are hoping to make many good memories as a family.  To help with this, we have transitioned to Hospice care.  I don't need many of their services right now, but we thought we would get things in place so when I did not help with day to day routines, we would have something in place.  One of the services that Hospice provides is a social worker that can talk with the kids and see how they are coping.  We want to make sure the kids feel loved and supported and have someone they can share their feelings with.  They need to understand that they will have a lot of emotions and how to handle those emotions in a beneficial way.  

This decision made me ask the question "Do I trust Heavenly Father and Jesus Christ?".  I know they have power over my cancer to make it do whatever they command it to.  I need to trust that whatever happens is for my good.  As I have pondered and thought through this, the scripture came to mind "Isaiah 41:10 - ¶Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."

Heavenly Father and Jesus Christ have been there for me throughout my life, especially these past 10 years battling cancer, so why would that change. I need to remember all of the miracles and blessing they have given me so far and trust they will continue. I am beginning to see why we told in scriptures to remember the hand of the Lord in our lives and in the lives of those who came before us. We have overwhelming evidence that the Lord blesses His children.

We are making a bucket list of things to do as a family.  So far we have gone bowling, which was a lot of fun.  I think we will try mini-golf as our next adventure.  Just being together at home also has its rewards.  I love to listen to the family sing.  Angela got some new music that we will learn.  All the kids enjoy singing and they all do a great job.  Daniel and I love working on puzzles. 

I know that Heavenly Father and Jesus Christ are real and want to be an integral part of our lives.  I know  that I am a child of God.  I know that they have a plan for us and will bless us with all we need to return to them as an eternal family.  I know Joseph Smith was a true prophet of God.  In know the Book of Mormon is the word of God.  I know that President Nelson is the Lord's mouthpiece today.  

I love you all.  Thank you for all of your love and support.  With Love, Doug : )

Starting off 2023 with more Chemo

 Hello wonderful people!  We are so thankful for all of your love and support.  We feel so blessed to be surrounded by your friendship, your compassion, and your service.  We are so very blessed.

We enjoyed a festive Christmas season.  We did things a little unconventional and it all worked out just fine.  We were able to celebrate Christmas multiple times, spending time with family and friends.  We had a wonderful surprise when the neighborhood showed up on our lawn one night and sang us Christmas carols.  It was very touching.

I had a scan on December 21st. We were so happy when it came backing showing stability.  We called it our Christmas miracle.  The feeding tube tube came out and I decided to not replace it and have been tracking calories and maintaining my weight.  

We  met with the oncologist at the end of December and he asked us to consider doing some kind of maintenance dose of chemotherapy.  His concern was that without the maintenance dose, the cancer would one day have explosive growth and nothing would be able to stop it.  We prayed and pondering this and felt that he was correct.  So, in January I started on a 40% dose every 3 or 4 weeks.  I still do not like the effects of the chemotherapy and have to remind myself why I am doing it.  I have been blessed to make it this long, I cannot give up now.

Great news!!  Matthew came home from his mission on February 21st.  He was serving in the Cameroon Yaoundé Mission.  He learned the French language and has been practicing as much as he can here at home.  He has been able to connect with some missionaries from his mission that live in Utah Valley.  He is such a wonderful man.  He is so kind and so committed to the gospel.  He is filling the big brother role quite nicely.  We are so happy to have him home.

So, back to chemotherapy.  The goal is to have the least amount at the greatest interval and still have stability.   It will take some time to get it just right, but we will get there.

We know that Heavenly Father and Jesus Christ  are in charge.  We know they are watching over our family.  Blessings with continue to flow and we will continue to stay on the covenant path.  We must be steadfast and immoveable.  We are not perfect by any means, but we are getting better at daily repentance.  

We love you all and are very grateful for you!

-Doug-

High CO2 levels and Feeding tube

 Hello Everyone!  

I hope this post finds you and your family doing well.  I truly appreciate all of the love and support you are showing our family.  We feel enveloped with your love, care and concern.  

At the end of the of the last post, I mentioned that we were going to try a 70% dose the next two chemo cycles.  On Monday, October 17th, I had my 70% dose of chemo and everything was going like normal.  On Sunday, October 23rd, I started to cough and couldn't stop.  I was having a hard time catching my breadth.  I didn't feel comfortable riding in the car to the hospital, so we called an ambulance.  They got me some oxygen and took me to the hospital.  They did an x-ray and found that I had fluid collecting near the lungs in the chest cavity.  They drained over 2 Liters of fluid from that lung space.  That seemed to do the trick and I was able to breathe better and was feeling better.  Things were looking good Monday morning for me to be discharged later that day.  Angela had visited me Monday morning and had left to run errands and manage all the other parts of her life.  

Well, once she left, I apparently went into a tail spin.  I still don't have all the details 100% clear as I was in and out of consciousness for the next few days.  They tell me that I had gotten up to use the restroom and my oxygen level dropped.  They couldn't get it to come back up even with high flow oxygen so they moved me to the ICU. There they tried different things like the high flow oxygen, CPAP machine, and then a Bi-PAP machine.  They couldn't figure out what was going on until they checked my CO2 level in the blood (thanks to the nurse who suggested this).  It was higher than it should have been and at its worst was 98%.  Angela was going to have to make the decision of whether or not to put me on a ventilator if things got worse.  Miraculously, my CO2 levels started dropping when they had me on the Bi-PAP machine.  During this time, I was in and out of consciousness.  I remember hearing Angela tell the nurse that she would have to go home and tell the kids that I may not be coming home from the hospital. This scared me and I asked Angela if I was going to die.  I think I was more sad than scared.  There are some things that I would still like to do before I pass to the spirit world and I will miss my family terribly.  There are relationships I hope to strengthen.  However, I know that there is a warm welcome waiting for me and there is nothing to be afraid of when I pass to the other side.  

I was in the ICU for 5 days and went back to the regular hospital floor.  They took good care of me and I was discharged on Tuesday, Nov 1st.  A BIG "Thank You" to Robert for driving my dad down to see me while I was in the ICU.  Thank you Steve for coming down and helping with tube feeding and bi-pap issues.  Thanks to my mom who was at my house caring for children.  Thanks to Angela's parents for all of their help and support.  The bi-Pap help and the visits were much appreciated and life saving.  It was a very uncertain time and we are so grateful to be past it.

Angela had had a surgery on Monday, October 31st and was still recovering from that.  Her childhood best friend Melanie came down and helped on Monday and Tuesday.  My mom needed to go home sooner than we were thinking.  (This is proof that even angels need to take a break.)  Thank you Kris for coming down and taking care of us on Wednesday and for the rest of the week.  Angela is such a trooper.  She was so concerned for me that she was overdoing it for her.  With all the help, we were able to get her to slow down a little and try to recover from her own procedures.  Over the years, she has sacrificed her own needs to meet the needs of the family.  She is a truly amazing woman and a spectacular spouse!

The recovery has been slow.   I have low energy and low appetite.  Hopefully the tube feeding is providing benefit for me.  I have been taking naps in the middle of the day with Angela.  This has helped my energy level in the afternoon.  Also, it is nice to snuggle in some warm blankets : )

I have been working on puzzles in between tings.  Thank you Brotherson for keeping me stocked with new puzzles.  I have to be careful not to spend too much time at the puzzle.  The phrase "Just one more piece" keeps me glued to the puzzle chair.

I had a follow up appointment with my pulmonologist and he ended up emptying another 2 Liters of liquid from around my lungs.  That is 2 Liters in 2 weeks.  Not a rate of fluid build up that we are wanting to see.  If the fluid keeps building up, they can put a drain in my chest that I would use each day or two to drain off the built up liquid.  

Well, hopefully I did not give you too much information.  I am so thankful for all the people that helped in so many different ways.  Thank you so much!  You were truly an answer to our prayers.

So, where are we are now?  I am at home with 24/7 oxygen and a feeding tube.  We are seeing if the feeding tube can beef me up.  I am retaining fluid in my arms and legs and we are monitoring how much fluid collects around the lungs.  Angela is mostly recovered from her surgeries, but is running around like they never happened (she is my hero).  I still get winded going up the stairs, but do OK on the flat, level surfaces.  One of my doctors did suggest Hospice care.  The more we look into it, we realize they do offer a lot of services, but we are not sure what they can offer for my lungs.  We will keep working with our Pulmonologist to figure out the fluid collection issue, but at some point will be transitioning to Hospice.  

We are hoping that my health will maintain or improve over the next few months, but for sure until Matthew comes home at the end of February.  It would be wonderful to be all together again.  However it ends ups going, I know that Heavenly Father is in charge and through His son Jesus Christ, my family is an eternal family and we will be all together in eternity.  I am so thankful for this earth experience and the relationships I have developed; the love I have for my family and others.  Each day is a gift and we need to use it as wisely as possible.  Use it to build, lift, create, love, share, invite, feel, and find.

Thank you all again for your help, love, support, prayers, faith, and encouragement.  

Love, Doug

Grateful for another Stable Scan

Dear family and friends, 

Thank you so much for all your love, support, faith, and prayers in my behalf and in behalf of our family - especially Angela, as she recovers from her surgery and tries to take care of the family.  BIG thanks to Kris, Mel and Mom Kotter for coming and spending some days with us during this recovery time.  It was a HUGE help!  Special thanks also to Mom and Dad Minert for the help they rendered during this time.

Well, as the title suggests, my October 11 scan came back stable!  HOORAY!! WOO HOO!!

We are so grateful for this miracle and tender mercy.  The oncologists were very pleased with the results, so much so that we decided to do 70% dose for the next two cycles and see what kind of results we get from that.  Hopefully we can still get stability without as many side effects.  

We have had some changes take place since my last post.  I am on un-paid medical leave from my work and am trying to qualify for Short Term and Long Term Disability payments.  Hopefully they will go through without a hitch.  We are using FMLA for the un-paid medical leave and it allows us to keep our medical insurance through my work if I pay my portion of the premium.  This is another huge blessing since getting insurance through COBRA would be very expensive.  In January, I will officially be unemployed and we can use that life change event to get insurance on the exchange.  Hopefully the plan will work out as we want it to.  We know that Heavenly Father is watching over and has already solved these problems for us, we just have to put ourselves in tune with His spirit and listen for His guidance.

October 3rd was the last day I did any official work for DHI.  They have been so kind to me over the years and we are so blessed that I was able to work for them for the last 11 years.  They are truly remarkable people.  I will miss them much.  

I was released from the High Council as well.  I have a paralyzed left vocal chord that does not allow me to speak for more than a few minutes before I start coughing and my voice goes out.  Also, I have been getting very fatigued with this chemotherapy.

I thought this blog would be longer, but I guess I was more concise than usual ; )

I know that Heavenly Father and Jesus Christ are real.  I know they love us and have a plan for us.  I know the Holy Ghost will teach us the truth of all things.  I know The Book of Mormon is the word of God and that Joseph Smith was a prophet of God.  I know that families can be eternal through the ordinances of the temple and by enduring to the end.

Thank you again for all of your love and prayers and support,

Love, Doug

Stable Never Sounded So Good!

 Hello all you wonderful people!  I am so grateful for all of you.  For your prayers, friendship, love, support, faith, comfort, and encouragement.  This journey would be so much harder without you!

So, like my last blog said, I started a new chemotherapy.  This chemo is supposed to work well with fast growling cancers.  My cancer is considered a fast growing cancer for most patients.  My experience has been that it will have these short spurts of growth then be calm for a while.  The first cycle went pretty well.  No major complaints.

The tumors at the base of the neck (on my right side) were getting bigger and the MRI showed cancer activity in the spine, so we decided to do radiation in-between the chemo doses.  I did 10 sessions of radio therapy, as they call it.  The sessions were quick and painless.  They gave me a bottle of sparking apple cider when I completed my last session.  

At this time, I was also having some issues with my voice, so we went to an ENT.  He stuck his camera up my noise and down my throat to see what was going on.  He saw that my left vocal chord was paralyzed open.  It was not moving.  The right would open and close, but not the left.  I was surprised and really curios as to why my local chord would stop working.  The doctor said an infection could caused it.  Ponder! Ponder!

The ENT did see something interesting about how I was swallowing it.  So he ordered a barium swallow study.  The swallow ended up getting scheduled on the same day as the second dose of chemo and the last day of radiation - a very busy day.  

We all know the scripture about not running faster than we have strength and to do things in order.  Well, the combination of the radio therapy, chemotherapy and swallow study, put me in a spiral downward for a few days.  It was rough.  Angela was very worried and took me to the ER a couple of times.  It was a crazy few days.  We hope that it was just the combination of all the things - which we will not do again.  

I was sick and very low energy and couldn't keep anything down.  I did pull out of it, but am not where I used to be.  I don't have as much energy.  I am feeling well most of the day as long as I am  careful with how much I do and how I eat.  

We really hope that this past episode was a one-off and that the rest go like the first.  

We have began planning for my passing and what needs to happen before that happens.  We have a document that outlines all the things that we need to do.  We hope to not have to implement these things for a vary long time, but we do want to be prepared.  

The hardest conversation we have had as parents was to Annie just the other day, explaining my situation and the possibility of me passing away.  So hard.  Tears were shed with that one.  

It was suggested to us that we make videos of me congratulating a child as it were some future date and a significant thing has happened in their life (priesthood, temple, mission, marriage, children, college, job, etc...  The equipment was give to us as a birthday present and we have started the process.

We are truly hoping that the next several cycles with happen without any significant side effects.  

So many miracles have happened over the years.  We have been blessed in so many ways.  We have so much to be thankful for.  

I love you all and am so thankful for you.  Your faith, prayers, friendship, love, and encouragement are heaven sent and truly appreciated.

-Doug-

Beginning a Different Treatment

Hello Everyone - I hope this post finds you happy, healthy, and wise.  I hope you are seeing the hand of the Lord in your life and feeling Heavenly Father and Jesus Christ's love for you and your family.  They truly have given us all things and do all they can to help us return to live with them again.  This is my source of hope and gives me the courage to face all of life's challenges.  

Well, we have had quite the year flying back and forth to New York, while I have been in the clinical trial at Memorial Sloan Kettering Cancer Center.  The doctors and nurses have been amazing!  We made many dear friends at the hospital, the hotel, and at church.  We were blessed in many ways during this time with the hotel stays, booking flights, and going to church.  A shout out to Mercy Medical for all the flights they got for us.  A shout out to Residence Inn Marriot on 48th street.  The staff and management were wonderful and helped us in many ways.  We were able to take the kids with us on one of the trips.  A family in New York would keep a box of things we needed for the hotel but didn't need at home and we didn't want to fly it back and forth every time.  

All of the prayers in our behalf gave us the courage and faith we needed.   We truly were lifted on eagles wings as we went back and forth.

Initially the treatment was effective against the tumors and they began shrinking (disease regression).  Then the tumors were just staying the same (stability).  Unfortunately, the tumors then started to grow (disease progression).  Now, the growth is such that it does not make sense to stay on the study.  I need to find a different treatment that will give me disease regression or stability.  

Our New York oncologist gave us 3 recommendations for treatment.  All of the recommendations come with worse side effects than what I have been doing, but that was to be expected.  We met with our Huntsman oncologist and our Provo oncologist and they both agree that we should try the first recommendation on the list.  I would take the medication on day 1 of a 21 day cycle, and have the 20 remaining days to recover.  That is better than taking the chemo for 5 days 😁

However, if the insurance does not approve it, we will try an older drug that I would take for 5 days and may have worse side effects.  We are praying and hoping for insurance approval.  

We have learned that some medications are prescribed with confidence due to the data collected on how other patients have responded to the medication and the medications historical effectiveness.  We are not at that point anymore.  Initially I was given all the standard sarcoma chemotherapies that had a history and had data to show their effectiveness.  Now we are in a stage where these other medications have been effective for a few patients and so it may be effective for me.  This is a act of faith and an exercise of hope.  

I have been battling cancer for 9 1/2 years.  It has been quite the journey.  I hope to live for many more years, but I don't want to waste any time or take any day for granted.  I am finding more joy in the simple everyday things of life like reading with the kids, watching the thunder and lightening, sending texts to family and friends, working in the yard, reading a good book, cooking dinner with the kids, and many more everyday things.  

I will start the new treatment the week of July 11th.  

I am so thankful for an employer that has shown so much compassion to me and my family.  They are generous beyond measure.  I am blessed beyond measure in so many ways.

Thank you for your prayers, love, support, faith, and smiles.  I know that you will be blessed as you help those around you and try to do God's will.  I know our Heavenly Father and Jesus Christ are real.  They love us and are reaching out to help us return to them.  May we all "Hear Them" and follow their voices and find the peace and joy we all seek.

Love you all,

-Doug-

"Good Enough"

 Hello Everyone,

I hope this post finds you in good spirits and feeling God's love for you.  I love the spring time with all of the plants coming back to life after the cold winter.  I love the blossoms and the smell of pollen in the air.  I love the bird chirping and the feel of sunshine on my back.  I love our yard.  We have different types of bulbs that come up early and others that follow into the summer.  We always have a bit a color somewhere in the yard.  I love the colors that Heavenly Father and Jesus put into our world and for our eyes that have the ability to view them.  I so thankful for this mortal experience.  As great as the great times are, I know that our eternal dwelling will be more amazing  than we can even comprehend.  Thanks be to Heavenly Father and Jesus for the beautify in this earth.

Well, in my last post I mentioned a scan in March that would determine if we would be able to continue in the study.  Just because I like to spice things up a bit, I decided to throw in a trip to the ER (ha ha ).  I was having some chest pain, bad enough that it woke me up in the middle of the night.  I was going to take some Tylenol, but Angela convinced me to go to the ER.  I had never had this intense of chest pain before.  It was like someone was pressing on my chest.  We went in and did all the tests.  The only thing that was unusual was a high white blood cell count, a high heart beat, and a questionable spot in the right lung.  Nothing was wrong with the heart. The doctors decided to treat it as pneumonia.  The anti-biotic did make me feel better and I was able to go home after a few days.  This was the same week that we were going to fly into New York for the next chemo cycle.  We bumped the cycle back a week so I could recover more fully.  We had the doctor's at MSKCC looked at the scan from the ER visit and they determined that the tumors looked good enough that they would give me two more cycles and then do another scan. This was a great blessing.

We did the two cycles and had a scan in April.  We prayed hard to know God's will for us - to know what to pray for.  We let Heavenly Father know that we would prefer scans that showed stability, but we would accept His will.  When we were talking to the doctor about the scan results, it was decided that they were "Good Enough" to allow me to continue the study.  This means that there was some disease progression, some disease regression, and some stability.  The disease progression was mild enough that it did not qualify as a trial ending event.  We were so relieved and so thankful that I could stay on the study.  We will take "Good Enough" and be very grateful for it.  We started a cycle and finished it here in Utah.

So now we have two more cycles and then another scan.  This will take us to the middle of June.  By then Jonathan will have graduated from High School and started working at least one job.  Daniel will have finished lacrosse for the Spring season and hopefully started working somewhere.  It is really hard to find a company that will hire a 14 year old.  Hopefully the yard will have hundreds of less weeds also.  Annie will have started summer swim team at the Orem Recreation Center.  Matthew is loving his time in Cameroon and love sharing the Gospel of Jesus Christ with anyone who will listen.  He will be home in February 2023.  Angela continues to be my stalwart defender and care taker.  She is always making sure I have whatever I need to feel well.  She is truly my Angel.

Thank you for all of your prayers and faith, love and support.  You have made this cancer journey so much easier than it could have been.  Knowing that there are so many people rooting for me and my family and supporting us in so many ways, allows me to face every challenge with hope and determination.  You are my inspiration.  

I love you all,

-Doug-