Nancy goes on Hospice.

Hospice

The decision was made to put Nancy on hospice care today.  There really wasn't much of a decision made on our part, cancer made it for us.  In the last few weeks, she has been on a steady downward trend. However, for some time we had hoped that Nancy would respond to her treatments and that we could balance the impossible, a prolonged and quality life. That said, the writing has been on the wall for a while now.  As I have mentioned previously, her treatments have not been working. Recently, her lungs have gotten much, much worse.  She has been very air hungry and gasping for air for several days.  She has felt like she has been suffocating. Sunday night, I left her for an hour or so and was downstairs with my boys. We had just sung a horribly out of tune song of Happy Birthday to my mom.  I got a call from her niece Angie (Christensen) Holton who was upstairs and then my son Jake walked down to tell me she was not doing well.  I went in the bedroom and she was a different person. In that short time, she must have had her O2 blood saturation drop to the point that made her very confused.  She was completely out of it and very shaky.   We were scared.  She had been asleep and must have not been positioned well along with added secretions that caused her to be way too low on her oxygen.  We quickly got her O2 up to where it should have been, but she was not rebounding.  The next morning, we had home health come.  We had signed up a couple of days prior.  I called my mom early in the morning and she came over.  She brought some electrolytes. Nancy had been so sick that she had thrown up anything resembling food or water.  We hoped the electrolytes would help level her out until we could get some IV fluid in her. Soon the Nurse Practitioner came from home health and gave her some IV anti-nausea and some fluid to reverse her dehydration. It didn't do much for her.  It was obvious that she was not doing as well and wouldn't moving forward.  Both my mom and the nurse practitioner told me independently that it would be wise to consider hospice.  Today, Tuesday we would meet with her team and they would tell us the same thing.  

Going on hospice means that you are no longer treating the disease.  The goal is to focus solely on quality of life and comfort.  Both of those have been sorely lacking in the middle of all her treatments.  It also does not mean that she/we are giving up.  She crossed over the line of treatment expectation a long time ago.  She fought the fight to superhero proportions.  Her team said they not only would not recommend more treatment; they would not allow it. She is no longer healthy enough for it.  It would only serve to punish and torture her - not prolong her life.  It was obvious that more treatment only meant more pain, nausea, suffering and discomfort.  It did not mean, nor would it ever mean, more time.  In fact, we had reached the point where it might have meant less time.  This is where I could pontificate about there being no honor or purpose in suffering needlessly, but I won't.  I think you get the point. She had raced to the end of the treatment finish line, she drove past it 100 miles and then chose to call it a race.  Really, though, the call was not made by her, nor us, nor the medical team.  

She tells me and the kids that she wants nothing more than to spend more time with them.  While we all know that, we do not want her to do it at 1% while suffering all of the way.  She tells me over and over each day "I don't want to leave you guys!" That is heart-wrenching for sure but watching her in pain is worse. I don't wish anyone to have to choose between the two.

Hospice has many benefits.  It will be a much more regular care.  We have been riding a roller coaster for a long time with high ups and really low downs.  Multiple times we have needed to take her in to the ER or the Acute Care Clinic at the Huntsman for more treatment or tests.  Those trips are really hard physically and emotionally.  There were multiple times where we got into an emergent situation and took her in.  Without me or anyone else able to stay with her, it has been rather nerve wracking.  The other thing that she has feared is dying alone in the hospital.  With Covid, that has been a reality to many, many people. With hospice, she can have other benefits include a round-the-clock team that can be here at a moment's notice, better access to and better administered meds that can keep her calm and feeling well, and round the clock care in our home. 

Timeline

One of the first things that you might be wondering is how much time she has left.  Nobody knows.  If I were to guess, it would be days to weeks.  Her lung capacity is horrible and not going to improve.  I have seen it get worse in the last week.  She is on such high O2 dependency, there is not any room for error.  After being at the Huntsman Hospital today, I loaded her in my truck and she suddenly started going down.  Her tank that was full when we left had emptied in that short time due to her high need.  I was going to lose her in the parking lot.  I ran quickly to the front and yelled "I need a tank NOW!".  Me and the guy up front ran to the 1st floor where they keep some extra tanks.  I had noticed them next to the piano a few weeks ago and it stuck in my mind.  I grabbed one that was full and ran back to the truck. I had not been gone for more than a minute and her blood saturations were below 50.  It was an extremely close call.  Had I left, and had she run out on the way home, there would have been no way to revive her.  Last night, we were able to wrangle a high flow oxygen concentrator.  The previous one would only put out 5 litres of oxygen. For most people, that is more than enough.  In the last couple of days, she has needed more than that. The new machine will go up to 10. If you are not familiar with O2 measurements, 5 liters / hr feels like an air hose in your nostrils. It is audible from several feet away.  

She is now to the point where she is very fatigued, groggy and usually sedated.  We will  need to limit visitors to avoid overexerting her.  

I am taking a leave from work to be with my family.  I plan on being home from here to the end.  I have never been more confident and more trusting that my work family will keep things rolling. Thanks from the bottom of my heart to those at work.  I am lucky and blessed to work with you we have something special going there.  

My kids

Last night I sat my kids down to tell them that time was fleeting.  Today after we went on hospice, we sat them down again and told them the plan of no more treatments and what that meant.  I know every parent is partial to their own and perhaps a bit biased, but my kids are amazing.  I cannot imagine at their tender ages being told what they have been and taking it as well as them.  I am proud of them, their resiliency, their love for their mom, their faith, their understanding, and their overall strength.  I am proud to call them my kids. I told my kids that I think that Nancy and I were blessed in the kid department because Heavenly Father knew we needed extra good kids with the trial we would have come our way.

 

It was never in the cards

Some of my dearest family and friends have been holding out hope for a miracle or a 9th inning grand slam to win the game.  I can say that I never have.  From the moment that she was diagnosed with her recurrence, we were made known both spiritually and medically that she would not get better, that she would not outlive this.  I think Heavenly Father did us a favor letting us know that.  There is some peace that comes with understanding.  While I don't pretend to understand the greater purpose as to why her "beating cancer" was not in the cards, I do appreciate knowing the outcome from the beginning.  It has helped me wrap my mind around it as much as you can.  It allows one to move forward.  That has been a very apparent blessing. 

 

Fast

Our ward fasted for us on the 16th.  In talking to Bishop Olson, I told him how we felt about her odds of getting better.  I told him what I just shared above that we were made known that she would not get better.  With that in mind, many of our new friends, neighbors and ward members fasted for our family.  The fast was for strength, faith and understanding for us.  I promise it has helped.  We have been buoyed up.  I want to give a sincere thanks to all who fasted and prayed for us.  

 

Videos

Nancy's niece Lacie (Ken and Serena's daughter) reached out to me a couple of week ago with an idea of a present for Nancy.  She said if we could give her names and contacts, she would have people send little video snippets to her, edit them, and then compile a video of well wishes for Nancy.  It has been an amazing treasure of a gift.  We watched it tonight with Ken, Serena and her nephew Brandon.  I pushed it to today because I felt that yesterday she would not have been alert enough.  I knew that it would be a tearjerker and it did not disappoint.  So many people love and care for my sweet wife it is truly too much to think of.  She has made an impact in so many lives.  It was truly an amazing experience to sit and watch that tonight.  My thoughts and feelings are still very raw.  If you want to watch it, here it is.

Rewind to the beginning.  I don't know why it is starting a few minutes into the video...

Link:  We love you Nancy!

  I hope it brings a smile to your face.  It made mine all lumpy, awkward, and wet.  I'm too close to it though...

 

Pictures

Last Monday the 17th we had our friend and amazing photographer come over for family pictures. Leading up to Monday, it was not looking promising.  Nancy had gone into the ER 2 days earlier.  I did have a feeling that it would be our last chance and in hindsight feel like we were blessed to be able to have them done.  I look forward to having those pictures for decades to come. I will post some as soon as we get them back.  The pics on the blog here are really outdated.

Anna Pocaro has done our family pictures for quite some time, but more importantly, she has been a great friend.  She went through cancer and treatments with Nancy the first go-around 9 years ago. If you have seen my family pictures over the last few years, you know when I say that she is truly talented. Give her a shot if you are ever looking for a great photographer. https://www.annapocaro.com/

 

Blessings of Modern Medicine

While going over all of Nancy's medication today with the hospice crew, I had a couple of thoughts.  One, it sounded like a good old-fashioned roll call for a school class and two, what a blessing modern medicine is. The funny thing is while I was entertaining thought number two, one of the nurses and my mom beat me to it.  They said out loud what I was thinking! I cannot begin to imagine what it would be like to go through all of this for Nancy without pain medications, without other meds that help with her breathing and feelings of suffocation.  It would make something that is hard to imagine being worse, worse. I am thankful that we live in these times.

 

Thanks

If you are reading this, you have probably made an impact in our life.  I am very thankful for that, whatever it is.  Some of them have been small, some of them have been large, some have been short, and some have been ongoing for years.  I thank you on behalf of all my family members.  I especially appreciate the kind deeds that have been done for Nancy and the kids.  They are my everything.  Those who treat them special are special people to me.  Thanks also to those who have shown me strength and what it means to be strong.  Thanks to those who have been a light in my life.  Thanks to all of you who have shown me what it means to love and to exercise faith.  

 

Faith

I know that families can be eternal. That is all that matters. There is a much higher purpose, a plan of salvation, a plan that allows us to return to our Father in Heaven and live with him and my family.  Once again, this lifts me up and gives me hope and faith.  I really do believe that and do not know what I would do if I did not. That would make this much, much worse.  I cannot wait to be with Nancy again.  

-Paul