CDH1 and COVID-19

2020 has been a year of graduations, not the high school and college graduation ceremonies that have been canceled, postponed, or made virtual, but leaving behind all things related to my cancer…except those that can’t be left behind (like not having a stomach).

This whole journey started in April 2015 when I was diagnosed with breast cancer. That May I found out I was positive for CDH1.  I had a double mastectomy in June 2015 and then a total gastrectomy in February 2017. That’s the background info. Now to the graduations. I’ve already written about my follow-up at MD Anderson in January of this year. At that appointment, Dr. Mansfield said I didn’t need to come back and see him anymore, that I could be monitored annually by my primary physician. Graduation #1.

Next up was the oncologist in June.  I was actually hoping I could skip that appointment, but I’ve always been one that if a doctor wants to see me, I go. This was my third oncologist in five years. I was going to the same cancer center, but the previous two doctors had left for one reason or another. My breast cancer was ductal carcinoma hormone-receptive positive, so I was prescribed a hormone blocker, letrozole, for five years. I had always assumed that once the five years was up, I’d be done with the oncologist. Since five years would be in June and I had enough drugs to get me through till past then, I called the office and spoke with the nurse to see if I needed to bother keeping my appointment. My breast surgeon who I saw in April, and will continue to see, actually suggested this. The nurse checked with the oncologist and he said he still wanted to see me, so I went. I met my third oncologist, he didn’t do any bloodwork or anything, we just chatted, and he released me. I don’t need to follow-up with him anymore. I did like him, and I did appreciate something he said. He said he would still be my doctor and was still part of my medical team, even if I wasn’t seeing him and that if I ever needed him, feel free to give him a call. I don’t expect to need him, but I still appreciated that sentiment. Graduation #2.

The oncologist told me to finish the prescription I had and then stop taking the letrozole. Since I was receiving a 90 day mail order prescription, that actually lasted me quite awhile. I just finally took the last pill a week ago. Graduation #3. The only regular medication I now take are vitamins.

As well as documenting my CDH1 journey, I feel compelled at this time to document the COVID-19 journey that we are all on and this blog seems as good of place as any to do that. This isn’t so much for those reading it now but more for the memories later of what we went through and for future generations that will read about 2020 in history books. I’m sure you, like me, never believed that we would be living in a global pandemic.

March started out normal enough. My Kansas Jayhawks were ranked #1 and were most people’s favorite to be National Champions. We were Big 12 Conference Champions again (after ending the 14 year streak the previous year) and were looking forward to the Big 12 Conference tournament and the NCAA tournament.

My best friend from college had ancestors from Fredonia, Kansas, the same small town in southeast Kansas that my parents were originally from, that I’ve had family in for generations, and where I still have family living. We had talked since college about going down there and never had. The last time we were together, we had decided that we were going to do it over her spring break this year. She had information about where the farm was near Altoona, cemeteries in Altoona and Fredonia she wanted to visit, and then we were going to do research at the Wilson County Historical Society museum in Fredonia. She is a professor at the University of South Dakota and her spring break was the week of March 9. We decided to go down Tuesday morning and spend the night, coming back Wednesday afternoon.

We had a great time. It was fun to get away and spend time together. She learned some information about her ancestors. In doing the research, I also came across names in my family tree multiple times and the trip reignited the love of genealogy in me. It was a great trip all the way around, but the best part was just spending time together. Little did I know how soon and how much things were about to change.

 Before our trip there had been some news about this coronavirus that had started in China and there were a few cases in the US, especially in Seattle, California, and New York, but nothing close to the Midwest. As a Department Chair, my friend started receiving texts on Tuesday about being prepared for possible online learning after spring break. That was my first indication that maybe this was turning into something bigger than we had initially thought. Then, just before the first games in the Big 12 tournament Wednesday night, the Big 12 announced that the games starting on Thursday would proceed, but with no fans in attendance. Then on Thursday, just before the games were to begin, they canceled the tournament all together. Many other conferences did the same thing, some in the middle of a game. Later Thursday, the NCAA also canceled the NCAA tournament meaning the Jayhawks would not be able to compete for the National Championship they were favored to win. Disappointing for sure, but this was the reality check that this virus, now called COVID-19, was much bigger than we had realized. The World Health Organization declared it a pandemic on Wednesday and a national emergency was declared on Friday, March 13.

When I returned to work at the church on Thursday, everything went quickly into COVID-19 mode. At first things seemed normal, but that all started rapidly changing. Every hour was like a day with things changing so fast, including the changes in sports mentioned above. My email inbox started filling with articles about the coronavirus and how to prepare. We had a funeral scheduled for the following Monday. The family had come to town to meet with the pastor to make final plans. They ended up deciding to postpone the funeral as they had family traveling from Seattle and other areas more affected. They thought they would wait till June when it would all be behind us. (It is now August and we haven’t yet scheduled the funeral.) We had a youth group from Oklahoma planning on coming to Kansas City and staying at the church for a week of mission the following week. Early Thursday afternoon, I had an email they were still coming. By late afternoon, they had canceled. That’s how rapidly things were changing.

We still had in-person worship on Sunday, March 15, although some area churches didn’t. We did make modifications such as no Passing of the Peace, etc. Our attendance was half what a typical Sunday would be. By Monday, the decision had been made to cancel all in-person meetings, events, and worship at the church, so much of my time was spent getting that communicated to our members and other groups that use the building, as well as assisting with plans for online worship the following week. The original plan was to keep the church office open.

That changed over the weekend when Johnson County declared a Stay-at-Home order effective Tuesday, March 24, followed by the State of Kansas on March 30. We had one day in the office on Monday to prepare to work from home. I did occasionally go into the office to collect mail and other needed items as well as to do some essential work that couldn’t be done from home. That continued until May 11 when the Stay-at-Home order was lifted and the church office reopened.

When everything was being shut down in March, we thought it was all temporary and things would return to normal soon, at least by May or June. The more time went on, the more we discovered that life wasn’t returning to normal anytime soon. Things started reopening, not because anything was better, but because there was pressure to open the economy. We had to make adjustments and find the “new normal” – social distancing, wearing masks, all these were part of the new normal. No one knows when, or if, life will return to what we think of as normal.

While we couldn’t have in-person worship, we developed other ways to reach the congregation, mainly though email and social media. One of the things we did was send out a daily devotion via email and it was also posted on Facebook.

When I reflected on the devotion I would write, I realized life being uncertain and developing a “new normal” was something I was familiar with. When I was facing my gastrectomy a little over 3 years ago, life on the other side was very uncertain. I knew things would never be “normal” again and didn’t really know what the “new normal” would look like. Sounds a little like how many of us have felt the last 5 months. Life on the other side of COVID-19 is uncertain. We’re not sure that our life will ever be “normal” again and are wondering what the “new normal” will look like.

We returned to in-person worship on June 21. It has very little resemblance to worship before COVID-19. In the summer, we always have Worship in the Park, an 8:00am outdoor worship service. It has been the most popular worship service this year. It had 51 people the first week and has consistently had in the 30s or 40s, a significant increase over last year’s numbers. The two worship services in the sanctuary have each been having less than 20 people, that’s 1/3 to 1/4 the number pre-COVID. People are obviously more comfortable worshiping outside than inside.

The two sanctuary services are also live streamed. Congregational singing is not allowed at any of the worship services, the hymns are sung by a soloist or a small group of no more than 3. At the park, people are asked to allow at least 6 feet between parties and they usually allow even more. In the sanctuary, every other pew is roped off and families are spaced out. Many churches have made the news by being a place the virus has spread. We don’t want to make the news.

We are living in a time I never thought I would experience in my lifetime. I still have a hard time believing it, but here we are. We do what we can to be cautious and stay safe, while not being fearful. In his sermon last Sunday, our pastor talked about the difference between caution and fear. The scripture was Matthew 14:22-33, the story of Jesus walking on the water and how Peter got out of the boat with faith, but then started to sink when fear overcame him. We need to remember during this crazy time we find ourselves in that God always walks beside us and guides us, if only we let him.

We don’t know when this will all end, probably not till after there’s a vaccine, which could be a year yet. In the meantime, we try to figure out what the new normal is and to stay safe and healthy. That is my prayer for anyone reading this blog.