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
