Nancy’s Obituary

 I will do an update later, but want to get her obituary out.  

https://www.larkinmortuary.com/obituary/view/nancy-christensen-limburg-911

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

 

 

Cancer in the Time of Covid

This is Paul. Going forward - just plan on me being the author unless otherwise stated.

This update is well overdue - it has been 10 weeks.  I end up putting it off.  I don't mind writing per se, I just don't like writing about this particular topic that hits so close to home.  10 weeks is way too much time and a lot has happened in that time.  I'll try to provide as complete and succinct of an update as possible.  

As a heads up, there will be some raw and tender things shared on here.  Even though it is impossible to let someone completely behind the curtain in situations such as what we are encountering, I'll try to give you  peek.  I don't do so for pity's sake, but for truthfulness and a more complete understanding. 

Nancy's Health

As I write this, she is back in the Huntsman Cancer Hospital.  She started a new treatment regimen last Tuesday (6 days ago) and has been extremely sick.  She has said over and over that she has "never been this sick". If you have never seen or experienced the worst that chemo nausea has to offer, you have not seen the depths of desperation, anguish, despair and overall physical illness that are possible to experience as a human.  

Nancy has been on oxygen for a few months now.  All day and all night.  She had a drain placed a few months ago as well to draw off the fluid that her lungs are displacing.  We typically drain it every 2 days or so and get 250 - 300 ml. out.  Before the drain, she was going in every few days for a couple of weeks to have a procedure done where they would drain her lung cavity.  Having the drain placed in her makes it a lot more convenient.

On May 26th she started a new chemo named Doxil.  She was to take it every 4 weeks.  While they administered it, she had an anaphylactic reaction and stopped breathing for a short period of time.  Once again, because of Covid-19, she was in there by herself and afraid that that would be the end of it.  After reducing the flow and pumping her full of steroids and antihistamines,  they were able to get it back under control.  What should have been a  2 hour transfusion, ended up being most of the day.  I found out about the reaction after the fact.  When I picked her up she looked much worse for the wear and like a different person than I dropped off.  She would have to be on steroids for the next 10 days. 

Once she got home, she got really sick and felt like she had the flu for 10 days or so. What followed was worse though.  She ended up with lip, mouth and throat sores that were extremely painful and problematic to her. They were not your garden variety cold sores or cankers,  think those, but 50x. She go to the point where she couldn't swallow and/or breathe very well.  She ended up admitted in the hospital again so that she could receive IVs and get her throat swelling under control.  She needed IVs because she had not eaten or been able to drink anything for a few days.  She got thrush that was adding to the swelling and discomfort in her throat.  We think that was brought on by the Doxil wreaking such havoc on her mucus membranes that it allowed for an infection.  She was absolutely miserable and beside herself.  We as a family felt horrible watching her suffer.  It really is hard to watch someone that you care about so much go through such misery. 

After this first treatment, she needed an extra week added on to be well enough to try again.  So after 5 weeks of mostly pain, suffering and despair, it was time to try again.  (The wanted to have at least 2 treatments to see how she would react). This time they preventatively planned to administer the treatment slower, with a lower dosage and pre-load her with antihistamines and steroids.  It went much better.  She was sick again and in bed and then the mouth sores came back.  this time, it did not get quite bad enough to stop her from eating or slow her breathing.  It got close, but she was able to avoid the infection and eat enough smoothies to make it out clear. 

Somewhere in the middle of all this, one starts to wonder if it is all worth it.  Our intent from the begging has been to prolong her life and have a good enough quality of life that she wants to carry on.  As you can imagine, that has not been the case for more days lately than not.  Even on her "good days" she barely gets out of bed.  I tell people that her good days are like a 3 or a 4 out of 10.  I might be generous on that and she is not one to overly complain of dramatize things, so it it tough to know. 

After all of the fun with the first 2 treatments of Doxil, we were seriously wondering if they were going to recommend that she keep going on it.  I dropped her off and waited in the parking lot last Monday, July 27th so that she could have her blood drawn and then have the results for her appointment the next day.  On the 28th I dropped her off and then stayed in the parking lot again and waited for her to FaceTime me.  We would discuss the treatment options moving forward. As we suspected, they were thinking it would be a good idea to move to a different treatment.  Hopefully, she would tolerate it better and hopefully, it would work better.  It turns out that her tumor markers where relatively flat and had actually gone up - we wanted them to have gone down a lot.  It was collectively decided that we would move to a different Chemo: Carboplatin.  Hopefully again the side effects would not be so bad. I have written in previous updates that she is running out of options on treatments and all of them are heavy duty and horrible.  

I mentioned it earlier, but she is sick.  Very sick.  It has been about a week and as I mentioned, she has never been so nauseated. She has required round the clock care or at least attention. Her getting so sick has been a major disappointment.  Wednesday night she was viciously retching and did not having anything to  throw up.  She has been so light headed, that she has twice fallen while trying to get to the bathroom.  She was so nauseated that she has not wanted to move a muscle -afraid that doing so would break the dam.  She has been on every anti-nausea under the sun, but to not much avail.  The best thing for her is to sleep 20+ hours a day. 

She has told me that if this is what her life is going to be like, she doesn't want to keep going.  That is hard to hear, but not has hard as watching her suffer.  I told her as I have many other times, that we would support her in whatever she decides.  The trouble with forgoing treatment is that it will allow the cancer to obviously get out of control and that is not a pleasant alternative.  That means her lungs will worsen and that will likely be what ultimately takes her.  This will happen anyway, and probably not too far off, but that is still a tough decision.  Believe me when I say that there is no honor in needlessly suffering to the degree that she has.  I really don't think that I could.  Who knows, maybe there will be a major improvement coming and we can reassess, but right now, things are bleak.

Summer Fun

In the middle of July, the boys were asking to go down to our condo that is up the canyon in Beaver Utah.  One evening while being very non-committal about making a trip down there, Sam (13 yo) got very emotional and started crying.  When he finally told us what was wrong (besides the obvious), he said he didn't think his mom was ever going to make it down to the condo again.  At the time he said this - probably July 15th or so, his prediction looked to be correct.  It would have really been a stretch to see us making it down there - with Nancy.  She was not doing well enough to imagine that we would make it plus, the condo sits at 10,000 ft and that is really thin air for someone with bad lungs.  We told him that we would try. A few days later on Saturday, we had been invited to go up to a cabin with some dear friends.  It is up by Smith and Morehouse.  We had a great time riding ATVs, playing cornhole just hanging out on the porch and catching up with good friends.  A day or two before this, we questioned if it would happen.  Then the following day, we woke up and Nancy was doing much better.  We decided pretty much on a whim to make the trip down to the condo.  The kids all helped to get us packed and we were on the road by 1:00 or so.  This trip was definitely a blessing - and a big one.  We mountain biked, golfed, hiked and fished to our hearts content.  Nancy stayed back in the condo and rested.  Just getting out in to the mountain air and making it down there for her felt like a huge victory.  She was air hungry even on her oxygen, but toughed it out.  Another maternal selfless act.  When we got back into Beaver, she felt like a new person she said being at a lower elevation.

What Sam was really getting at about the condo wasn't his desperate need to go there, it was a yearn for normalcy.  It was a concern for final times.  Many things have felt like they might be final times.  The last time we will be able to...  It is hard to put into words what that feels like, but it is not good.  Hardly a minute goes by that I don't think about her, what she means to me and the kids and what the future will be like without her.  I try to stay in the moment, but it messes with you.  

With everything going on, I have made a big effort to find things for the kids to keep them busy.  This is mostly for the boys as Emily's life right now keeps her busy.  Some of the things we have done are golf (a lot), pickle ball, (we made a pickle ball court in the warehouse portion of my office building), kuub, staining patio furniture, our own yard work in addition to the lawns and yards that they care for, assembling a go kart, racing at fast-kart, climbing at momentum, mountain biking (a lot), making bread and much much more.  I think that the busier they are, the better - in general, but even more so right now.  I should also mention how great the kids have been around the house.  The dishes, cleaning, cooking etc. are all being taken care of and a lot of that is coming from the kids.   

Covid-19

The Covid-19 pandemic has caused a lot of different issues for everyone in the world.  We as a family are not unique in this regard.  What might be unique is how safe we must play it. If Nancy were to get the virus, she would not make it.  That is a fact.  Her lungs are still very poor.  It is not something that we take lightly and I do think that we have a bit of a unique perspective in that regard.  I'm not sure how a worldwide pandemic has become political banter in the USA.  We are one of 200 countries that are all dealing with it to different degrees.  I'm not going to go on and on, but please understand that for some of us, the risks outweigh the reward by a million fold.  That means that we have tried to be careful.  We are not great at it and have tried to find balance between ruining our kid's lives and protecting Nancy.  That has been hard and scary at times.  The kid's are concerned about it and it weighs on them to a degree.  I mentioned it in the last update, but it really sucks to not be able to go with her to appointments and procedures.  I completely understand it, but it makes it a lot harder for her and us (and everyone else in a similar situation).  Visitors have been down at our home for good reason too.  Nobody wants to giver her the virus, but it does make it harder on her.  

Kids 

 One of the inevitable questions that we get asked multiple times a day is "how are the kids doing"?  I think we usually give a generic answer to the effect of "about as well as could be expected" or something similar.  The truth is, this trial is having an impact and it will have an impact on them.  For privacy, I won't give specifics, but they are all suffering along with their mom and in their own ways.  We are doing whatever we can to give them the help and resources that they both need and will need.  I think that any child going through something like this is will struggle.  It is normal.  We have great kids and I have no doubt that they will not only get through this current trial, but will be stronger and more resilient afterwords.  Our kids are a credit to Nancy and will be her lasting legacy. I'm not going to say that we are glad that this has come on us or something like that.  What I do believe is that we can't choose our trials, but we can choose how we respond to them.  

   

Gratitude

Scores of people, many of you reading this have been great to us.  We have been on the receiving end of more that can be imagined. The meals, texts, letters and more have all been appreciated.  I know that I have said this before, but Nancy loves the texts, the funny group texts and other messages.  She has had some lunch visitors a number of times outside on our patio and I know she loves those. Thanks to all who heart-attacked our lawn with sweet notes from her work!  She is not always very responsive to the messages, but she does receive them and loves them.  She would be more responsive if she felt up to it.  Many times Nancy and I have mentioned to each other how blessed we feel with our friends and family.  We would not trade them for anything.  We also feel like our path has led us to where we are now so that we could have these close friends.  Family can't be chosen, but we are really blessed in that regard as well.  Forgive me for not giving every detail and every friendly gesture, the list would be very long and I would forget someone.  Just know that we appreciate all that has been sent our way or the way of our kids.  Thanks to those at work too who have been supportive and understanding.  Not to mention those who have had to lift more than their share of the load.  I appreciate you all.

Faith 

We do believe that we will see each other again and this gives us strength. I can't imagine facing this without that knowledge.  We will miss Nancy more than I am able to express, but our faith and understanding of the plan of salvation provides us with hope.  I know that families can be together forever and that is our Heavenly Father's plan. I know that he has provided the way for this to happen.  I know that we can get through this and we have seen a myriad of ways that His hand has reached out and helped. 

Love,

Paul and Nancy and kids.

    

    

A bad scan and a change in plans

Absolutes

The sun rises in the East, The sky is blue and water is wet.  Each of these things you can count on.  Apparently, you can also count on me writing an update every time Nancy has a step in the wrong direction with regards to her health. So here we are. 

The main purpose of this blog is to update those who care about her and don't want to be asking all  the time how she is doing. I know how on your end you do not want to be pestering her/us about it all of the time, but you do care and you do want to know how things are going. I also know that most of you would do whatever you could to ease the burdens. Many have done so much and we will always be thankful for that. All that I can hope for is that at some time we can repay the favors to those who have been so great to us or pass them on.

I probably should update this more often - even when things are going relatively smooth - just so people are kept up to date.  Honestly, I think that the reason that I don't update more is that we get into a routine and then try to just live as much of a normal life as much as possible.  Everywhere we look we see her cancer and what that ultimately means and that is hard.  I think one of my many ways of dealing with it is to compartmentalize my thoughts and feelings and at times not deal with either of them.  Sometimes I bury my head in the sand.  I have that benefit.  She doesn't.  She has too many reminders.  She can't avoid it.  She almost always feels horrible both physically and emotionally.  They feed off of each other.  She can't escape her poor health and fatigue.  She can't escape all of the meds and all of their side effects.  She can't get out and away much.  She has appointment after appointment that remind her of her current situation. She just can not avoid it.  Cancer is an ever present and an ugly companion.

Scan and Plan

Saturday, May 16th Nancy went in for a scan.  This was not a regular scheduled scan.  She had been short of breath and feeling more fatigued and just worse overall for a little while.  This scan, as with most, we thought would validate what we had worried about and what those implications would be.  Her breathing was not only short, it was crackled and labored.  She could hardly walk across the room without getting winded.  She was desatting (her O2 levels in her blood were down). Those were signs.  Signs that the last treatment regimen had likely run its course and that her disease had spread. 

There are lots of appointments.  Multiple appointments every week.  I have just skimmed over them in these blogs, but there are always appointments and most of them aren't just a nuisance, they are unpleasant - a constant reminder of cancer's carnage.  Nancy had her weekly appointment on Tuesday May 12th and told them things were getting worse.  From that, they tried to set up an appointment to get her a CT scan at the end of the month.  She said that was not going to be soon enough so she pressed and they got he an appointment for the following Saturday, May 16th.

Many times, Nancy has assertively advocated for herself and been rewarded with different results whether it is getting scans read in a timely manner or getting into a sooner and much needed appointment slot.  She knows the industry and doesn't just take at face value what they say all of the time. Don't get me wrong, her team has been great overall, but there are times where standing up and saying how things really are can be a major benefit.  After many of these times, we were left asking ourselves what would have happened had we not spoken up or asked more questions.  Take that as a public service announcement. 

Another thing that I have skimmed over is the anguish of waiting on results.  There are not many things in this world worse than waiting on results - scan results, lab results, test results are all indescribably difficult to wait on.  I don't think that those on the treatment side always get that.  When my dad was getting his cancer treatment over 9 years ago, he said something that really stuck with me.  He said something to the effect of "I never knew what it felt like to be on the other side and truly feel what they are going through".  That was after 35+ years of caring service and work.  We really don't know what others are going through and while having good intentions, many service providers can't possibly know what those they are caring for are fully feeling.  If you have never had to wait on test results that may tear your world inside out, you can't possibly know what that feels like.  Just like I can't possible know what giving birth feels like or losing a child or having a debilitating disease feels like.  There are 100s of other things that I can't explain or understand to their fullest since I have not walked that path. 

Two thoughts from that:

1. I have asked myself or Nancy many times how different it would be if the person who needs to upload the scan or report it back had ever been on our side.  Many times, we know that the results are back, but they have not been posted. They must not be conscientious to those feelings and the must have blind spots. While taking their time, these people can't possibly be thinking of the heartache, anxiety and angst that come while waiting to see if your (or a loved ones) pathology comes back positive for a  devastating disease or even waiting on the results of a scan that you are afraid will inevitably show more disease spread. 

2. What are our own blind spots?  How can we better put ourselves in other's shoes to serve and treat them better?  How can we seek to understand others more? 

We waited anxiously over the weekend for the results of the scan.  Even though we have been in that boat dozens of times before, the waiting and anxiety don't get much better.  I think we have gotten better at anticipating and preparing for the bad results though.  The scans did show a lot of disease spread throughout her lungs primarily.  They also showed a large pleural effusion.  Both explained her difficulty breathing. They put her back on oxygen and she went in last Tuesday to drain the effusion.  to do so, they stick a needle in and draw the water off.  I know what you are thinking and you're right, that doesn't sound pleasant.  She didn't complain too much about them drawing 25 oz of water off of her lung.  The procedure did seem to help with her breathing until it didn't.  Friday she was back in to draw more fluid off.  As you can imagine, feeling short of breath is not on most people's bucket list.  It is exasperating and scary.  She was worried with the long weekend that she'd end up needing to go the the ER.  We just had to make it to the day after Memorial day. 

Speaking of the day after Memorial Day, that is the day that she would start her new treatment.  Last Tuesday, we did a tele appointment with her oncologist to develop a new game plan.  We have been hoping to avoid this stage of Nancy's cancer story.  This is when we are really running out of options and things feel like they are speeding to a hasty halt.  She is now to the point where her last remaining options are really aggressive chemo.  That was confirmed on our cal with Dr Beck.  She was frank with us regarding the future and her expectations of longevity.

This is the 4th treatment plan since her re-diagnosis.  As I write, she is in the hospital getting her first transfusion of Doxil.  The good news is she only has to get it once a month.  The bad news list is larger.  It is nasty stuff.  It has a long list of side effects.  It will make her more sick.  most of all, it is very similar to a chemo treatment that she had years ago, so the prospects of it lasting a long time are not great.

I don't mean to be such a downer, but hope is diminishing that She will have a great response, feel great and get back in the swing of things.  It can happen, it just is not very likely.

COVID-19
Apparently there is a virus out there wreaking havoc. Covid-19 has affected us similarly to everyone else would be my guess.  At first we went from thinking that we would lose everything we have, to now feeling like we'll get through it and my business and finances will take a hit, but we'll be fine.  The bigger issue is that of protecting Nancy's health during this.  There is a picture of Nancy in the dictionary under "immunocomprimised".   I have been worried about that more than most I think and I'm not a worrier. Even as things have opened up more, I have been more reticent to allow lots of contact with my kids etc because of that.  Oh and I know 7 people who have tested positive and one of our painters passed away last week due to COVID-19.  He was not in contact with any of our clients at the time and he had been hospitalized after some time off of work, was put on a ventilator and ultimately succumbed last Tuesday. All of those things are making me a little more conservative in regards to COVID-19.

One massive bummer coming out of the pandemic is that Nancy has to go solo to all of of her appointments, treatments and procedures.  I can't even go in the hospital.  Also, people really couldn't or didn't feel like they could visit her as much.  We are coming out of that, but that was an added layer.

This last weekend was our 1 year anniversary of moving in to our beautiful new home that we built in our dream neighborhood.  On one hand it feels like 10 years, on the other it feels like a month. 

Once again, we are thankful to everyone who has been so kind and helpful to us.  We love you all.  There has been a lot of support.  Sometimes we try to get on our ring camera to see who dropped off which treats.  The treats have been plentiful.  Probably too plentiful if you are asking me and my waistline, but we are thankful nonetheless. 

While Nancy is not wanting "to leave us" and vice versa, we do have hope in a brighter future together as a family and are grateful for that knowledge and faith.  I am also hopeful that we will find ways to make the best of an awful situation and become better versions of ourselves for it. 

Much love and thanks again,

Paul

A New Treatment Regimen

Nancy and I went to an appointment with her oncologist yesterday.  Several days ago she had some scans after on onset of chest and back pain.  Pain for someone who has had or has cancer is nerve racking.  There is always the thought that it is back or that it is worse.  Anytime you have an ache or pain, there is a high level of fear and anxiety.  Nancy lived with that for 8 years before our worst nightmare came true.  Anyway, she had back and chest pain and we made an appointment with the Acute Care Clinic at Huntsman.  (The Acute Care Clinic is basically their version of InstaCare).  We knew that they would likely order some scans and that they would likely show disease progression.

A few weeks ago, she had other scans that showed slight disease progression.  Her tumors and lymph nodes measured larger as well as more overall involvement.  That wasn't a complete surprise either as her tumor markers in her blood tests were going up.  The people who run the study were on the fence as to whether or not she could stay in it because of the cancer's advancement.  We left there a few weeks ago knowing that if there was any more disease progression, they would kick her out of the study and she would start on a new treatment plan.  For one, the study doesn't allow you to stay in it if you get worse and two, you don't want to - you want to try another regimen.

So, as we went to the appointment, we knew that the outcome would likely be a change in treatment along with an interpretation in the scans that show that it has worsened.  Nancy had already read the scans over the weekend and knew what the radiology oncologists had written.  Knowing what the likely outcome would be probably took some of the sting off, but didn't make the news any better.  The reality is; we are now 2 treatments down and running out of options.  In each of the first two treatments she showed marked improvement initially, but then stopped functioning after 3 or 4 months.

The new regimen  is Ibrance (estrogen blocker) and Falslodex (stops cancer cell division).  Healthcare nerds click here: https://www.breastcancer.org/treatment/targeted_therapies/ibrance

Her doctor said that while it is definitely not positive that she has not had a good long response to the previous two treatments, that there is a chance that she will to this new round.  I pressed and she said that there are and have been others in similar situations who have responded well in spite of the previous poor responses.

Among all of this, life goes on.  While I was taking Sam and Zach to the orthodontist before meeting up with Nancy, Jake was busy taking the ACT.  Life definitely doesn't slow down in the midst of the storm.
       
We continue to have great help and support and...dinners.  It has been hard to accept them - but love them at the same time.  Hard because it is tough being the pity case and feeling like we are putting people out.  We love them because, well they're delicious.  Shout out to Cristina Ibarra and Liz Wright who brought us some peruvian and mexican food cooked con mucho amor last night. Many, many people have brought us food on Tuesdays and Thursdays that has been other-worldly. I should mention all of the incredible people who have made the food and those coordinating it, but this post will probably be shut down for using up too much of google's memory.  Just know that we do appreciate each and every person who has given service, love or support.

The visits, walks, game nights, and other acts of service have been very helpful to Nancy.  Sometimes I get asked whether or not she is up for visitors.  The answer is usually yes, but you can always call.  She does get fatigued a lot still.  You can text her or call her.  If you don't have her number and want it, text me (801) 554-0440

My work family has been a big support.  I haven't talked openly about it a lot there because I don't want to bring down morale and  the cancer in itself is bad enough.  I don't need it to impact my company too.  They have been very understanding and in some ways have picked up additional work or tasks.  I don't tell them all enough, but I am very grateful for them and to them.

Nancy's work friends have been great too.  One of the hardest things for Nancy has been quitting her career.  She loved her job, her friends there, working with the nicu babies and making a difference in their lives.  That has been taken from her and along with it, a big piece of her identity, her purpose and her passions.  She enjoys the contact from her work friends, especially the funny texts.

As with most trials there have been lots of opportunities to learn. We can't choose what comes our way, but we can choose how we react or respond.  When we confront a trial, we still can choose to not let it take complete possession of our world.   We can find lessons to be learned and grow.  We can remain positive and use the trials to benefit others that we encounter.  It is up to us as to how we will respond.

Live life.  live in the moment.  Life is short (cliche alert!).  We really don't know what tomorrow brings, so we should make today the best that we can.  Search for and do the things that improve and enhance our lives.  In the 8 years since her original diagnosis, I think that we did a better job of this.  We didn't care as much about all of the trivial things in life.  We cared less about money and other concerns and tried to make experiences.  We traveled more, we lived more.

Take your shot.  The things we end up regretting in life are the times we didn't take the shot. The times where we knew we should do something, but chickened out or rationalized it away.  The times where we didn't act or say what we knew we should.  The promptings that we ignored.

What are the things that are holding us back from living our best life?  Write them down and then either stop doing them or do them.  Believe me.

I just got off of the phone earlier today with a friend who told be that he was finalizing a divorce in a couple of days. I didn't even know.  Lots of people are silently suffering.  The thought that came to me - as it has in the past when hearing of a difficult situation - is that EVERYONE has struggles.  It doesn't have to be a contest of whose trials are worse than whose.  We could never measure that anyway because how a given trial affects one person is likely completely different than another's response.  I am reminded by something I heard from Henry Eyring. He was quoting a former leader of his who said: “When you meet someone, treat them as if they were in serious trouble, and you will be right more than half the time.”

Be more caring and less judgmental.

I will get off my podium, but it turns out there are lots of things to learn while going through difficult times.

Much love,

Paul

The bump in the road has grown.

Paul here.

You may or may not have heard, but we found out last March that Nancy has had a recurrence of her cancer.  It is Stage 4 (non-curable) and it came as devastating news and continues to be.  The plan for her treatment is to provide as high of a quality of life as possible for her for whatever amount of time she has left. Our family is doing our best to process what the diagnosis means and how we will move forward.

The first thing that comes to mind for most people is the inevitable and understandable response of “how long”? The short answer is we don’t know.  The average survival time for people who are diagnosed with metastatic breast cancer is roughly 2 years.  Those studies were done years ago, there are newer treatments and each person has their own story. That is one of the hardest things to deal with, the simple uncertainty of not knowing how Nancy’s story will play out.  We are focusing on trying to make the most of the time that we do have together and to make it as good as possible.

For a variety of reasons, we have not been good about getting the news out nor about putting out updates. That has created a situation where many concerned people or people that we care about are either unaware or wanting to know what is going on.  If this is the first that you have heard of this news, we are sorry that it did not come out sooner.  When the news first came, it was very difficult to process and felt all encompassing.

I can assure you that we are in good hands and that we are thoroughly seeking the best treatments and options available.  Nobody wants the outcome to be better than we do.  Cancer is very tricky and unique for each individual, so news of a cure for a specific cancer may not apply.  While well intentioned, it is not usually helpful to be given advice of new cures or treatments.  Nancy is currently in a new study very specific to her and her type of cancer. Thanks for understanding.

Moving forward, I am planning on having regular updates.  I will probably do them by email and blog.  This is an attempt to help people we care about feel in the know and to get the message out in a more controlled way.  Up until now, we have updated people as they would ask by text, phone or in person.  That requires a lot of constant updating and is less efficient.  By getting our regular updates, we can help people know what the current status is and will need fewer touch-points to do it. 

While I am thinking about it, we would be very ungrateful to not recognize those who have been so generous and caring to us in this process.  We have an amazing family, the world’s best friends and the Church’s best 2 wards. Our community has been better than we could have ever hoped for in every way imaginable.  Between the meals, the rides, the walks, the trips to and from the hospital, the fill-ins the visits and everything else, we have been truly blessed.  If you are reading this and have in any way helped us out in the last 11 months, we really do recognize the help and support and appreciate it – even if we haven’t always said so. We have been blessed in many other ways that we could not possibly adequately describe here. 

We are trying to stay positive, hopeful, and have faith.  It is not always easy, but I do think that we are trying.

Current Status/history

There is lymphatic spread throughout most of her chest and reaching up her neck and down towards her abdomen.  There is slight involvement in her lungs, sternum and a rib.  Her pericardium has had a lot of issues and she has had 2 windows placed.  That is where they cut holes in the lining of her heart. Her pericardium filled up 2x with nearly 1 liter of fluid.  The fluid and the pericardium tested positive.  She has been on a couple of different treatments and will likely transition to more.  If you are interested in specifics, I can expound later.  There have been 2-3 stays in the hospital and various surgeries and side effects.  She had multiple pulmonary emboli, effusions (water on her lungs), and massive clots the length of her leg into her abdomen.  She has paralysis in a vocal cord.  She at one point had completely lost her voice but has improved a lot.

She has been home for a couple of months now and feeling relatively well.  Her ‘well’ is relative.  She is able to get around for the most part, but at times is fatigued, nauseated or otherwise not feeling well.  The illness has had a mental effect as well. 

The next thought usually goes towards our kids. A quick update on them; Emily is a sophomore at BYU and recently got back from a study abroad in Jerusalem.  Jake is a junior at Highland High, Sam is in 7^th grade and Zach is in 3^rd.  They are resilient and doing about as well as could be expected.  While I might be biased, I think our kids are amazing. 

As I mentioned, I would like to get updates out more regularly.  If you would like to get these updates, either sign up for the blog or let me know and I can add your email address to an email group. My email address is plimburg@certapro.com.  My phone number is 801-554-0440.  Email or text me your preference.

Once again, we thank each and everyone of you for your caring and for everything that you have done – whether recently with Nancy’s illness or in the past.

-Paul and Nancy.

Unexpected drama

My life has been going along very smoothly for the most part since I have last posted.  Paul's business has been doing well, and I have been trying to keep up with the kids.   I have had a few breast cancer recurrence scares with a breast lump that my oncologist felt during an exam that turned out to be a cyst, and shoulder pain which ended up being a rotator cuff injury.  In the beginning of June I started having right sided chest pain that would come and go and a feeling of fullness in my chest.  I was still able to work out and wasn't that bothered by it.  I even did a hundred mile bike ride without problems.  In the back of my mind I was concerned that it could be pain from metastatic breast cancer (breast cancer that has spread).  But I have learned that I can't get upset about every little ache and pain I have or I will drive myself crazy!  I went to Philadelphia June 17th -20th to a conference for people with BRCA mutations like myself and was having the pain there off and on too.  On June 22nd, which is my mothers birthday, I decided to ride up Emigration Canyon after work  with my 12 year old Jacob.  About half-way up the canyon I started getting what felt like a really terrible side ache.  I told Jake to go ahead and I would meet him at the top.  The pain started getting worse and I started having a lot of shortness of breath.  I wanted to stop but felt like I had to get to the top because Jake would be there waiting, and also in my mind, I thought that it was just a terrible side ache and would go away as soon as I started going down the canyon.  I finally made it and we started down the canyon.  About half way down the pain was increasing and I started to get scared so I called Paul to see if he could come and get me.  He was in Murray and started driving towards the canyon, so we coasted down the canyon.  After arriving home we went to the ER and driving there I was pretty sure that I was going to have a metastatic pleural effusion from breast cancer metastasis to my lung.  It turned out after a chest x-ray, I had a pneumothorax, which is a hole in the lung that leaks air out into the chest cavity.  It is also called a collapsed lung.  By that time I was a little more comfortable and wasn't having too much trouble breathing so instead of draining the air, the Dr started my on Oxygen and sent me home with instructions to see a pulmonologist the next day.  I spent a week on Oxygen and slowly my lung healed and the air outside my lung absorbed.  I had a CT of my chest and everything looked great.  A week later I was given clearance to go back to my usual activities so I went out running and felt great!  I went again the next day and about 1 1/2 miles into my run I started having the same chest pain and shortness of breath.  I called a friend to come pick me up and take me to the hospital and sure enough the pneumothorax was back.  Because it had happened a second time I needed to have surgery to repair the hole in my lung.  I was sent to IMC admitted and scheduled for surgery the next day (July 8th).  I had the top part of my right lung removed and a procedure called a pleurodesis which basically scars the lung to the chest wall so it can't collapse.  The surgeon was concerned that the hole in my lung was caused from breast cancer metastasis, but the pathology showed no cancer.  It turned out the my lung was fried from the radiation that I had 3 years earlier to treat my breast cancer.  This is an extremely rare complication from radiation for breast cancer.  I spent nearly a week in the hospital and had to have a chest tube which was quite painful.   On the day I left the hospital I noticed some pain with swallowing, it has persisted and after a lot of testing, we think that it is from the staples that were used to seal my lung.  They are lying right next to my esophagus and airway.  I am almost 2 months out from the surgery and still having a lot of pain, irritation, and difficulty swallowing.  My original surgeon pretty much told me I was crazy and there was nothing wrong with me and I needed to see a counselor.  He said that the difficulty swallowing had nothing to do with my surgery or pneumothorax and would probably have happened anyway????  He stopped returning my phone calls which made me feel very panicked.  I have switched surgeons since.  Emotionally it has really set me back.  I think I have a lot of PTSD from my original cancer diagnosis and a lot of my anxiety has returned.  Because of all the stress I started waking up at night with panic attacks, and crying a lot during the day.  I had a lot of plans for the summer to do fun activities with the kids but haven't felt like doing much at all.  I had a few weeks when I didn't feel like even getting out of bed, and didn't get up very much.  I ended up finally seeing a counselor and I started an antidepressant/anti-anxiety medication which has helped.   I am afraid that I will have this pain and difficulty swallowing forever.  I am trying a course of steroids now to see if it will help with the irritation, but I haven't had any improvement yet.  I am back to work and just try to keep myself distracted which helps but I really haven't had any improvement.  I have some more appointments this week so hopefully we will come up with a plan for me to get better.   I wish I had a better update.....another 3 months of my life that cancer has ruined.