2nd Chemo Treatment w/good news

 I kind of left you with bad news on the last post and it didn't sound good after the first chemo, which was 100% true.  The thing I didn't discuss from my last post as well is that it had already been 3 weeks since that first treatment.  To this date I have now had a total of three treatments.  

After our discussion with the doctor after that first treatment our nurse stayed with us and was an angel on Earth.  She reminded us that there is a much greater power that we have to rely on.  That it was up to Him and to continue to have hope.  She said she has seen miracles and to never give up Faith.  Her words were exactly what we needed to hear in that moment. The Lord has his hand in everything.  He answers our prayers through those around us and in these small tender moments.

We went into the second treatment not knowing what to expect. After the second treatment I had some scans on the abdomen and they showed promising results.  We talked to Dr. Grossman, my oncologist, and he was very happy with what he was seeing.  Blood work numbers came back much better than he had expected.  Prayers are answered.  This discussion was a night and day difference from just weeks before.  There was hope in his voice and he was impressed how well I had come back out of the "valley" as he called it.  My white blood cells bounced back and he was pleased with how my body was reacting.  As we went into this next treatment we felt a little more prepared.  I have been assigned an SOS team for pain management, which has helped.  We were armed with a better understanding on how to manage things. 

The recovery from the second treatment has also been a hard one. The day after the treatment I went back in for a shot that is suppose to help give me a boost and help my white blood cells recover quicker. I have also been retaining a lot of liquid in my legs and abdomen.  This is due to my liver not being able to process the fluids the way it should.  I was sent to a lymphedema doctor.  I am now sporting some compression bands on my left leg to push the fluid out of my legs. We are dong one leg at a time.  Hoping to soon move to the right leg in the next few weeks.  I was also able to get a paracentesis to drain the fluid from my abdomen.  Which provided much needed relief.  Hoping to get in soon to get another one of these done.  

We had a great Christmas.  It was calm and quiet. We had family parties virtually.  It was good to see the faces of those we love, but can't see in person.  The blessing of technology. We had many angels that dropped off treats and gifts.  We really are surround by an army of angels that have touched our hearts and lifted our spirits.  It is truly overwhelming. 

This past Wednesday I went in for my 3rd treatment.  We met with Dr. Grossman again before the treatment and again he was happy with how things look.  You could see the smile behind the mask. It is reassuring to see and hear the optimism.  Hoping this treatment will have a quick smooth recovery.  My next treatment will not be again until the end of January.  Hoping that gives me some time to feel good.  

Thank you everyone for your love, prayers and support.  We have the most amazing people surrounding and lifting us up.  We love you each.

First Chemo Treatment

 The first chemo treatment was pretty rough.  The Monday after treatment I started feeling pretty crappy and it went downhill from there with pain, uncomfortable, nausea etc.  Wednesday I finally went to the er.  Since it was the day before thanksgiving there were no doctors around and not many people could help out.  They gave me 2 options, first was to be given pain meds and go home.  Second was to admit me to the U hospital where I really couldn’t get treatment for the chemo side effects.  I choose to go home and try and spend thanksgiving with my family.  Thanksgiving day was pretty tough too.  Fatigued, in pain, nausea etc.  We started having a delicious thanksgiving feast around 3:00 ish.  Unfortunately I took a couple of bites and couldn’t keep it down.  Again everything went downhill from there and I went back to the ER.  This time they offered to admit me to Huntsman which I thought was the right thing to do so I did.  The nurse took great care of me in the hospital.  While there we learned I had C-Dif which is a bacterial infection and not very fun to deal with on its own let alone with cancer.  We don’t know if this was from chemo or somewhere else but I just finished up on my antibiotics for this.  The doctor also thought I had a hepatic fever which is a side effect from chemo and low white blood cells.  I was in the hospital until Monday to take care off some of these items.  The C-Dif would go away with the antibiotics.  Low white blood cells needed to increase on there often and they needed to be satisfied with the no more fever.  I was able to do that by Monday so I went home.  While in the hospital they taught me about pain management, some physical therapy stuff and if I feel crappy to call and talk to someone, not to push through it.  I came home November 30th.  Dr. Grossman that week was talking about how to make me comfortable at home and feel good.  Obviously that is bad news and feels like terminal.  He didn’t come out and say that but that was clearly what was meant.  

Abrupt Change

I write this post from the hospital where I started my first round of chemo yesterday.  My liver blood counts were just getting too bad so they wanted to get me started on it immediately.  It all happened so fast.  We went to the Dr for a normal checkup and he wanted me on chemo now.  The problem was that there were no appointments within a couple weeks to get me the treatment and he wanted to start now.  So he devised a plan and pulled some strings to get me admitted to the hospital so we could get started immediately.  So I have been in the hospital since Thursday.  The miracle he worked was the fact that there were 15 people waiting to be admitted to the hospital and only 2 beds available (we have all heard about the hospital bed shortage, well it’s real).  I was 1 of 15 people who got a bed that day.  The chemo treatments will be every 3 weeks and this will be the only stay in the hospital unless other issues come up.  The stay has been pretty uneventful and boring.  Visitors can only come up for 4-8 pm (including my wife) and only 2 people can be on that list.  This morning as soon as the doctor makes his rounds I should be going home.  

In my last post I hadn’t been feeling well.  That has continued for the most part over the last couple of months as well.  Okay I’m the mornings and into mid afternoon and nights have mostly been pretty tough.

#cacnersucks

#fightlikehell

P.S. Take a look at that amazing, luscious hair.  Enjoy it now cause it will all be gone in a couple of weeks.  At least no more shaving or manscaping for me for a while!

Roller Coaster Ride

 Well I hadn’t been feeling awesome over the last little while.  Upset stomachs, some pain and fatigue.  My blood work hasn’t looked the greatest recently either.  So obviously there was some concern with what was going on inside my body.  

I had some scans on Monday morning and didn’t have a follow up appointment scheduled to review them any time soon.  The doctors assistant called this morning and was really wanting to me to come in and meet with the doctor today.  Obviously we made it work but it threw up all kinds of alarms that things were probably not looking great and gave us some cause for alarm.  

When we meet with the doctor it started kind of how we expected.  He said we are seeing enough progression in the lung and lymph node that we need to move to Chemo drugs (it will probably come to this eventually anyways but still would rather not do it).  He also said there was a blood clot in my liver from the y90 treatments that we needed to take care off with blood thinners.  As we kept talking he pulled up the scans.  I don’t care to look at the scans because I really can’t tell what I am looking at.  As he was going through them he kind of went quite for a couple of minutes and kept looking at the scans.  When he was done he said that he really didn’t like it when radiologists talked badly about his patients.  He went into more detail that the progression that he saw was no where near what was described in the radiologists notes.  After that he said that what he saw doesn’t warrant going on chemo yet.  Huge change from the beginning of my appointment.  Not the discussion turned to the blood thinner which I have to inject myself twice a day.  So exciting for me right.  He also said we would keep trying the Pembro until the next scans.  The hope is that the blood clot in the liver has caused my blood work to be kind of messed up and that the blood thinner will help to solve that problem over the next little while (just wish me luck having to stab myself).

So the roller coaster came from not feeling great over the last little while to the urgency of the phone call and appointment with the doctor to not really changing anything we are doing which was kind of a relief.  

Now into life, we are busy with Pickleball, soccer and baseball.  It is hunting season so we are trying to find time to get into the mountains as well. Kids are enjoying school for the most part and doing pretty well too.  No vacations going on or planned right now though I wish we could go somewhere to get away.  Just doesn’t seem to be in the cars right now.

We did take a drive up to Bear Lake one day, did a hike in the Uintahs and as you can see lots of Pickleball, hunting and fishing.

#cancersucks

#fightlikehell

Finally an Update

 I know, I know, it has been a while since I have updated everyone on what is going on.  First, I am going to share some thoughts before I give an update.  

This pandemic has been very interesting to me.  There are many on both sides crying foul play.  Masks are awful and shouldn't be worn while on the other hand many say that masks are now essential to our way of life.  I don't know who is right and who is wrong.  What I do know is that everyone is getting a very tiny glimpse of what us "high risk" people deal with every day of our life.  People say if you are "high risk" you should alter the way you live so you don't get it and we shouldn't have to worry about you.  I promise, we have altered the way we live in so many different ways even before this pandemic.

I have been dealing with my own personal pandemic for almost 3 years now and what I wouldn't give to be able to go back to living a normal life without cancer and without masks and without the fear that has been spread.  Unfortunately I don't know if that is in my cards.  I don't know if my personal pandemic will ever go away.  I don't know if I will ever return to normal.

I know people who have other ailments that feel the same way.  I have a sister with Type 1 Diabetes (her own personal pandemic) who would give it up in a heart beat and would try anything, like wearing a mask, so she could live a "normal" life of not having to babysit her blood sugar levels in fear of dying.  

I have done multiple trials in hopes that it would cure my cancer.  Even though they were unsuccessful I have no regrets about trying them because they gave hope.  What I am trying to say is that if a mask is what the doctor/experts order to help with the pandemic and gives us some hope of returning to normal, why wouldn't we do it?  For me, even if it isn't a so called cure if it helps slow down disease I would take it in a heart beat.  If it allows me to get closer to a normal life, I would take it.

I am not telling anyone what to do and how to live their lives but wanted to share my thoughts from maybe a different perspective then you are used to.

Sorry for my rambling.  Now on to the actual update.  

I met with Dr. Grossman (my oncologist).  He was extremely pleased with what the Y90 treatment did to the tumors in my liver.  He seemed pretty giddy which obviously makes me pretty happy.  He said moving forward we really had 2 different options. First, we could do nothing and wait to see what happens.  Continue with the scans and watch for it to return.  When it does, go back after it with the same Y90 treatment.  Second, he thought we could go back to trying Pembro and see if there was any response the second time around.  Me not being one to sit around and wait I said let's move forward with Pembro.

Come to find out, insurance won't cover something where you have seen disease progression.  Pembro is about $25k per treatment.  For me it seemed like it was off the table until they told me that I might be able to qualify for the Merck Access Program which would give me the drug for free for a year.  I was amazed that they approved my application so I don't have to worry about the cost.  

I did my first treatment on August 17th.  All went according to plan.  The biggest obstacle was related to the blood work on my liver prior to the treatment.  With the Y90 treatment I know that there was some damage to my liver and the hope is that the liver fixes itself at some point.  Some of the metrics they look at regarding the liver were high.  I am sure at some point if those metrics don't get under control we would have to start looking at doing something else.  Like I said previously if this get's me back to some state of normal I will take it.

This past week I have felt pretty crappy pains coming from my liver.  I haven't had much energy but am optimistic I am starting to get some of that back.  Time will tell.  

We have been pretty busy lately too.  Made a trip to Lake Powell, Brooklyn's team won a soccer tournament, Madi, Easton and Brooklyn all medaled in a Pickleball tournament, went on  frog hunt, Boston start soccer and flag football, Madi started working at the Jimmy John's in Kaysville, kids all started school and many more adventures I am sure I am missing.  Needless to say we are still enjoying life!

#cancersucks
#fightlikehell 

Scan Results

Well it has been about 6 months since I started the Y90 treatments on the liver.  The hope was that they would slow the growth or reduce the growth of the tumors there.  I just met with the interventional radiologist and he seemed to be more than pleased with the results he has seen with this treatment.  I don't remember his exact words but he basically said that he doesn't think he has ever seen a response like this to this type of a treatment.  The tumors in the liver have been reduced by more than half and he thinks they are still shrinking.  This is probably some of the best news we have received in a long time (2 1/2 years) and so we are running with it.   

It wasn't all good news though.  He brought up some spots on the lungs again which they have gone back and forth on for a while now and also something about one of the lymph nodes.  These are things we will discuss with the oncologist in the coming weeks to see what he thinks and where to go from here.  I will probably have what is called a PET CT scan which is a full body scan that looks at cell activity.  This will give us a better look at the lungs and the lymph node.  Once we have done this, we will figure out a new plan and move forward with it.

Obviously we have always had this hope that things would work out and the news about the liver is so good.  You only have 1 liver and if that doesn't work then you are in some serious trouble.  We will continue to fight and hope and have faith that things will work out for the better.  We are grateful for the support everyone is constantly providing.  Thank you all!

On another note, I have started feeling much better.  To that point I have been playing a little pickleball every now and again which has been great.  We also did a pretty good hike yesterday, only 3.5 miles but it kicked my butt pretty good but I was able to do it and feel good.

#cancersucks

#fightlikehell

Quarantine and Me

I had my last Y90 treatment almost 3 weeks ago.  I have almost fully recovered from that treatment.  Still occasional pains and just feeling blah but it seems to be less with more times if feeling good.  I get pretty tired around 6:00 - 7:00 at night but I really haven’t done much physical activity for a long time.  I haven’t chatted with the doc since my last treatment so I am not sure what the next steps will be.  If I were to guess it would be a new set of scans to see what is happening inside and then make decisions from there.  For now I am just going to enjoy the good days.

How has this quarantine affected me?  First the family our vote me and decided to get a dog.  Her name is Koda and the kids seem to be enjoying her.

 

I have been pretty fortunate to be able to work from home for the most part.  It has been a real blessing and I will probably do it for the next little while until we start seeing some results from opening things back up.  I am pretty comfortable going out in public and being outside but when going into store or places with a few more people I am cautious and put a mask on.  My wife custom made me one and I know everyone is jealous of it.

The rest of the family is doing great.  We are done with home schooling which our kids rocked.  They either didn’t learn as much or were way more efficient in their learning because most only spent a couple of hours a day on school work.  The problem with that was they get bored and start to drive you crazy.  Good thing we have a dog so they can drive her crazy rather than me and Jen.  

Also, one last shot out to all those who gave their lives for us at any point in time.  I saw a quote that resonated with me.  “The true soldier fights not because he hates what is in front of him, but because he loves what is behind him.” - G.K. Chesterton

#cancersucks

#fightlikehell