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.