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.

Goodbye Houston

We flew down to Houston on New Year's night for my follow-up with Dr. Mansfield at MD Anderson on January 2.  It was surreal walking into the room at the Rotary House, the hotel adjacent to MD Anderson.  We've stayed there for previous follow-up appointments, but I don't recall feeling the same way I felt this time.  Maybe it's just that I am doing so well, I feel so removed from when we were there nearly three years ago for my surgery.  I flashed back to then, being there the night before surgery and facing the fear and the unknown. I flashed back to being there recovering after surgery, not knowing what to do, not knowing how to begin life without a stomach, throwing up in the bathroom sink....it all came rushing back to me.  Keith had some of the same emotions as he commented that he saw me as more fragile in that space. 

We went over early on Thursday for my blood draw appointment to increase the likelihood of them actually having the results before my appointment.  Dr. Mansfield was also running behind so they had all the results except one at the beginning of the appointment and got that one before we were done.  I was within normal range on everything. My B12 count was normal, but at the low end of normal.  They suggested I increase my dosage to two sublingual tablets a day instead of just one.  They also recommended getting a bone density scan done as they like to do that around 3 years after total gastrectomy, which is coming up soon.  But that can be done in Kansas City with my primary care doctor.  I will also want to continue having blood work monitored annually, but that can all be done up here.  I'm done with follow-up visits to MD Anderson.

Four years ago I had never been to Houston.  Now, 9 visits later, it was time to say goodbye.

I was excited to learn that Dr. Mansfield and a team from MD Anderson is doing a research study to put together a CDH1 Gene Registry to track those with the gene mutation and their medical information, family history, etc.  Hopefully, through this research, they will be able to learn more and eventually people with the mutation will have more information and more options when determining whether or not to have a total gastrectomy.  One of the most frustrating things when I was first diagnosed was that there was very little information available.  I am thrilled to be a very small part of changing that.  With this study, they will continue to be updated on my medical history and be in touch with me yearly for up to 11 years, but there is still no need to return to MD Anderson for follow-up.

So, GOODBYE HOUSTON!

Two Year Anniversary

Two years ago today is when I had my stomach removed.  The past year has been a good year.  I'm in a good place.

Here's some highlights of the year:

We went to Mackinaw City, Michigan in September.  Mackinaw is my husband's hometown and he has a website devoted to the region mightymac.org.  One of the main purposes of the trip was to walk the Mackinac Bridge on Labor Day.  It is a 5 mile long suspension bridge connecting the upper and lower peninsula.  The entire walk ends up being about 6 miles.  I'm not someone who does much exercising and when I do go for a walk, walking a mile or two is pretty much all I do,  but I did the 6 miles with no difficulty.  I had also walked the bridge in 2011, but I had a stomach then, so it was totally different.  Last year we were there at the time of the bridge walk, but I did not walk; it was too close to surgery.  But this time I thought I could do it and I did. I did make a point of taking snacks and a water bottle with me.

Four days before the walk, we bicycled around Mackinac Island.  It is 8 miles around the perimeter of the island.  Here again, I don't bicycle.  I think the last time I had been on a bike was the last time we bicycled around the island which was four years ago.  There again, when I had a stomach.

I was a little nervous about both of these adventures, but I had no trouble with either of them.  My tag line when I posted the pictures on Facebook was "no stomach, no problem!"

In October, we made a trip to Maine to visit my brother-in-law and sister-in-law.  I had fun shopping at the LL Bean Flagship store in Freeport and the J Crew and Calvin Klein outlets in Kittery.  I might have went overboard on purchases, but on the other hand after losing 85 pounds, I still hadn't really replenished my wardrobe, so I had a good excuse.

Which brings me to my weight.  I have finally stabilized.  After losing 1-2 pounds per week for the first year, from my appointment at MD Anderson in January 2018 to my appointment in January 2019, I only lost 8 pounds.  And I think I lost 6 of those pounds as a pound a month in the first six months and just 2 pounds in the last six months, so I would call that pretty stable.  Because I was overweight going in, I feel really good about my weight at 157.

My follow-up appointment in January was a good appointment.  In general terms, all my blood work came back with good numbers.  My BUN number was a little high which could mean I have some dehydration.  It wasn't significant, just a little. They did suggest more water and/or less caffeine.  As I've mentioned before, iced tea is my go to drink and I don't really want to give it up.  What I've started doing is making two pitchers: one caffeinated and one decaf.  I drink the caffeinated during the day and the decaf in the evening.  I've never felt tea kept me up at night, but having decaf in the evening I figure is a good idea anyway.

My blood pressure was also a little low (99/67), not horrible, but not great.  If you recall, my blood pressure was a little high going into the surgery (ever since I got diagnosed with breast cancer and then CDH1) and I went into aFib after surgery, so they put me on Metoprolol tartrate.  The surgeon's speculation was that I may need to lower the dose, partially because of the weight loss.  I finally got around to calling the cardiologist today and although I'm due to go in March, they can't get me in until June.  But I talked to the nurse and we're going to go ahead and cut the dosage in half and see how I do.

Those two things were both really minor.  I continue to get an excellent report at my surgeon's visits because I am doing great!  I really am doing better than I ever expected and better than many of the people that have this surgery.  Dr. Mansfield said he wanted to see me again in a year, but after that, I would probably "graduate" and not have to come back any more.  That sound great to me!

Happy Two Year Anniversary To Me!

Almost 1 year follow-up

When I saw Dr. Mansfield in June, he wanted to see me again in 6 months, which would have been December, but December is too busy so I scheduled the appointment for January.  That means it is just shy of one year since my total gastrectomy on February 21, 2017. 

As I said in an earlier post, I was a little concerned that I would get yelled out for losing too much weight as he had stressed needing to have the weight stabilize when I saw him in June and it didn't start to until November and then I started losing again (although at a slower rate) in December.

But that wasn't the case at all.  The nurse actually commented about how much I had lost since my June appointment, but that I looked really good and that it appeared to be a healthy weight loss.  Dr. Manfield's assistant reviewed all of the blood work and everything basically looked good.  The only one that was a little low was the prealbumin protein (I think) which is better than it was in June, but still a little low, but not of major concern.  B-12 levels and everything else were good.  The only other thing she mentioned was so insignificant that she wasn't going to mention it, but of course, she mentioned it telling us she wasn't going to mention it and that was hydration.

When the assistant looked at my incision, I made some comment about how pleased I am with how the scar looks and she agreed and said it was one of the best she has seen.  I don't think I can take credit for that, but I like it.

When Dr, Mansfield came in, he didn't even look at the lab results like he normally does.  He too was happy with where I am weight wise and said that as long as it has slowed down and I don't lose it too fast, if I lose another 15 pounds or so (over several months), that would be OK.  It was nice to hear that we are on the same page which I didn't necessarily feel in June.  I'm not looking to lose another 15 pounds, I'm very happy with where I currently am. but if it happens, it would be OK.

The report was good enough that he doesn't want to see me for another year.  So I'm good with that!

Follow-up

I had a follow-up appointment last Thursday at MD Anderson with Dr. Mansfield and the nutritionist. This was the second trip to Houston since returning home March 4, after surgery on February 21. I got another good report. There were a few minor issues/concerns:

1. Even though I would like to continue the weight loss, Dr. Mansfield is slightly concerned and would like for it to stabilize or at least slow down. I lost 15 pounds the first 2 weeks, then have lost about 2 pounds a week since. As I went into this overweight, I am good with that and honestly, would like to lose another 30 pounds or so. He's OK with that, but just wants to make sure it doesn't get out of hand.
2. My protein levels are a little low; not bad but a little less than what he would prefer. So I need to figure out how to increase my daily protein intake. I make sure I have protein with every meal and snack, but I'm not doing as good a job as I was in the beginning with having protein between food (such as a protein smoothie) and I often skip an evening snack. I need to get better about an afternoon and/or evening protein drink, as well as an evening snack. Sometimes we don't eat supper until 7:00 or so and then I don't want to eat again before going to bed. I need to get better about eating something.
3. My hemoglobin count is at the low end of normal. The recommendation was to make sure that my gummie multivitamins contain iron. I'm going to have to get back with him on that one as I have looked at every bottle of gummie multivitamins in two stores and none of them contain iron. So I'll have to see if he has any other recommendations.
4. It is time to start taking Vitamin B12. It can't be absorbed through the multivitamin or through normal pills, so I have two choices: a daily tablet dissolved under my tongue or a monthly injection. I chose to go with the daily tablet for now. I can always switch to the injections later if I decide I don't like the tablet.
5. The surgeon really stressed I should do more walking so I don't get muscle atrophy and such. I was doing a good job of walking almost every evening before I went back to work. Since I've went back to work, I use up all of my energy during the day, so I don't feel like walking at night. He encouraged me to push myself a little and that the more I do, the more I will feel like doing. It will be hard, but I'm going to try to start walking again, especially evenings we don't have anything else going on. If we do have evening activities, I will still find it difficult to push myself that much, at least for now.
6. The night before my appointment, I noticed some spots on my tongue, like the top coating was off. I thought there was a chance it was some sort of nutrient deficiency, so I asked about it. The doctor immediately identified it as thrush. He gave me 3 different prescriptions to aggressively treat it, so I guess I'm glad I noticed before my appointment.

I don't have to go back to Houston for 6 months. He wants to check on me by phone a 4-6 week intervals in between, but I'm glad we get a break from a return trip. And that will put it in winter in Kansas, so a trip to Houston then may be pretty appealing.

One more thing.....

I almost forgot the best news of my follow-up appointments today....

I no longer have to keep a food diary and document everything I eat and drink.  Yea!

Follow-up trip to MD Anderson

Had a follow-up appointment today with Dr. Mansfield and the Nutritionist at MD Anderson.  I know I'm doing well, it was nice to have that confirmed by the test results, surgeon and nutritionist.

The nutritionist is ready to have me venture out and try new things.  She wants me to try more fatty foods.  She wants me to try sweets.  Basically, she wants me to see if I tolerate these things or if they make me sick.  I need to start small and start at home.  I don't like the idea of getting sick out  It seems strange to basically be trying to make yourself sick, but if I don't try new things, I'll never know if I can have them or not.  We'll see how it goes.

We fly back home tonight.  Quick trip.  They want to see me back in 2-3 months.

I'm hoping tonight's trip home is uneventful.  The trip down last night was a little more eventful then I would have preferred.  First of all, our flight scheduled to leave at 2:21 got pushed back to 4:38.  It was basically 5:00 before we actually took off.  When you need to eat every 2-3 hours, these type of delays become an adventure.  I ate chicken breast and cheddar cheese and crackers for lunch on the way to the airport, about 12:45.  I packed string cheese and pretzels for snacking on the plane.  I first had them about 3:15, while still waiting at the airport.  I had them a second time, along with the savory snack mix (pretzels and a couple other things) offered by the airline while on the plane about 5:30.  About 7:00, we were getting close to landing and I was talking about plans for supper and the need to eat before checking in at the hotel because it would be time for me to eat again and I really didn't want string cheese and pretzels again.  As we were getting ready to land, we had made our decent and were getting close to landing on the runway, when the pilot aborted the landing and we started gaining altitude again. When he finally explained to us what happened, apparently another plane decided to taxi on our runway. Glad we aborted landing instead of crashing into the other plane. We circled around and had a successful landing.  However, by the time the landing was delayed, we got off the plane, got the rental car, etc., it was now 8:00.  We found the closest restaurant, but by the time we ordered and then they were running slow, it was almost 9:00 before we got food.  Even though you supposedly don't feel hunger without a stomach, you feel something and by this point, it was long enough past the time I should have been eating that my body knew it and I wasn't feeling well.  The food finally came and I was able to eat and feel a little better, but it's sort of funny that when you're hungry, you can't eat as much as you can other times.  The nutritionist confirmed this morning that this is normal.  I need to figure out a wider variety of snacks to pack so I have some other choices in this type of situation.  Just one more of the things I'm learning....

We did have sort of a fun encounter on the way to the hotel after the restaurant.  We saw a very bright meteor move across the sky. We're on the interstate, right next to downtown Houston and it was as bright as could be. I'm not sure I've actually ever seen a meteor before, definitely not as bright as this one. It passed by us (very quickly) and then disappeared into the night sky.  That was cool.

Pathology Results

Finally talked to the surgeon today and got the pathology results.  Were supposed to take a week, took three, not sure why it took so long.  Reminds me of the genetic test results in the beginning that took two weeks longer than they were supposed to.

The results were about what I expected.  10 spots were identified: 8 were in situ which means they are more superficial, not even advanced as far as T1A tumors; 2 were intramucosal, which is T1A.  T1A is no problem, it is noninvasive.  If they were T1B, that would mean they had invaded into the submucosa, but that was not the case.  Since the entire stomach was removed and nothing was invasive, nothing more needs to be done.

What these results also do is give me the reassurance that I made the right decision to have the prophylactic total gastrectomy.  It could be that I could have lived the rest of my life and these would never have grown to be invasive T1B tumors, but it could also be that they did and they weren't detected until it was too late.  That is a chance I'm glad I chose not to take.

Home Sweet Home

We had the follow-up visit with the surgeon and the nutritionist on Thursday.  We were hopeful we would get released to return home on Saturday when we had tentatively booked our return flight for, knowing that was the best case scenario.  I so wanted to get home, I started even talking about trying to get the fight changed to Friday, if we got released on Thursday.  When we met with Dr. Mansfield Thursday, he was very tentative about releasing me.  He talked about how I was near the end of when leaks could happen, but they could still happen.  He talked about two blood test results that had changed more since I had been released from the hospital than he would like.  He discussed seeing what the nutritionist said and then deciding.  He knew we were determined to go home and the fact that we already had a flight booked helped.  He finally decided to retest the two blood results on Friday.  If they were stable or moving back to pre-hospital release numbers, he would let us go.  If they were trending further away, he would want us to stay another week.  Both test results had to do with hydration.  I felt like I was staying plenty hydrated, but the blood work wasn't necessarily supporting that.  I did everything I could to make sure I stayed hydrated the rest of Thursday and Friday.  At 2pm Friday, we had my blood drawn again.  Then it was wait for the phone call.  It was about 3:35 when Dr. Mansfield's assistant called.  The test results for Friday had been similar to Thursday's results, so I appeared to be stabilizing.  She asked me all sorts of questions about how I was doing.  She was happy with the answers and said I could go home Saturday.  Yay!  I knew Saturday would be a big day.  I knew travelling would be difficult.  But I knew recovering in my own house with my own bed and my own furniture and a full kitchen would be so much easier than recovery in a hotel room.

The travel was actually pretty easy and uneventful.  Our flight was at 10:45 so we left the hotel about 8:30.  Because of my weight restrictions, I could only carry my purse.  Keith had to lug both suitcases and both carry-ons, I felt bad for him, but he was great.  We had little line at the airport to check luggage or go through security.  The gate was close by so I was able to walk to it and didn't need assistance.  The flight was on time, less than 2 hours direct to Kansas City from Houston.  We had plenty of room so I was able to stretch my legs during the flight, important to not develop blood clots.  I didn't get up and walk as the physician's assistant had recommended, but just did so in my seat.  We made it to KC.  My oldest daughter, Jesi, picked us up in my van and we were home by 1:30.  And I got to sit on my couch in my living room.  It is wonderful!

Remembering

It was about 9:20am on March 2, 2007. when I got the call that changed my life forever. That's the day my husband and the father of my two wonderful daughters, Jesi and Mary, died. We've been through so much since then. 4 graduations, 3 weddings, 1 divorce, and so much more. I love my girls so much. It is hard to be away from them today. I want to wrap my arms around them, but I can't because here I am on March 2, 2017 embarking on another journey that will change my life forever. I had the follow-up with the doctor and nutritionist today. He can't decide whether to let me go home on Saturday or not. A couple of the blood counts are not quite where he would like for them to be. Will have another blood test tomorrow and then decide. So much uncertainty, so much unknown about this future without a stomach. So much like 10 years ago when I didn't know how I was going to keep going, but knew I had to. For myself and for my daughters. I now also have a wonderful husband and son-in-law, and ex-son-in-law. They have all played such an important role also. Thank you to everyone who has helped us get through the last 10 years and who will be along on the journey for the next 10.

Relief!

I have a surgeon! I have a dietitian! Yea!

I have been going crazy and so stressed out the last couple of weeks because as I have been preparing for this major surgery in Houston, I have been having trouble finding a surgeon and dietitian in KC to follow-up with once I return home. I couldn't find anyone qualified and willing to see me while I was still under the care of MD Anderson which is what I need. I have talked to so many doctors offices and such over the last few weeks, it's ridiculous. I now have local support. I am so happy. I feel like a heavy burden has been lifted.