Being Sick

In July, I had a bad cold that wouldn’t go away. I was congested and coughing. I had a slight fever that came and went, and I alternated between chills and sweats. I also had a weird occasional pain in my right temple. It wasn’t a normal headache but it was bothersome and I wanted to take something for it. I don’t take pain relief medication very often, so I forget what I’m supposed to take. I remember being told after gastrectomy that I should take either Ibuprofen or Tylenol, but I can never remember which. I reached out to Dr. Mansfield’s staff at MD Anderson to confirm and want to document it here so I always have it: “It is best to take Tylenol only.  The Ibuprofen, Advil and Aspirin can irritate your intestines and not recommended.”

One issue I have when I have a bad cold I think is related to the total gastrectomy. When I cough a lot and especially when I cough really hard and deep, I cough up whatever is there. Sometimes it’s just liquid, but if I’ve recently eaten, it’s whatever I’ve eaten. It’s not like vomit, it’s just whatever I ate, that’s why I call it “coughing up” instead of “throwing up.” Being so sick, I didn’t feel like eating to start with, and then when I did eat, it would trigger the coughing, which would have me coughing up the food I did eat, which would make me want to eat even less. It was an endless cycle. Because I have put on more weight post-TG than I would prefer, I actually did like the 10 pounds I lost in the first 10 days of being sick, but it’s not a way I recommend for losing weight. However, I am happy that so far, I have been able to keep most of the weight off.

After 10 days of being sick, I decided it was time to see a doctor. I don’t like to go to urgent care because I don’t like explaining the no stomach thing to new health care professionals. Unfortunately, my primary care provider didn’t have any openings for several days and originally they tried to schedule me with someone at a different office within the same healthcare system. When I explained my situation, they transferred me to someone at my PCP’s office and I still couldn’t get in with my doctor but was able to get in with another doctor in the same practice, so I felt a little better. I figured even though she didn’t know me, at least she could consult with my doctor if she wanted to.

The doctor hadn’t read anything on my chart, so she knew nothing of my history. She decided to put me on antibiotics to clear out the sinuses. We talked about the no stomach and that therefore, I couldn’t take any time release meds such as capsules or coated tablets. She decided the regular amoxicillin tablets should be fine and prescribed them. This was on Wednesday. She told me I should feel better my Friday. When I picked up the prescription, I found that the tablets were "film-coated". I wasn’t sure exactly what that meant and wasn’t sure if they worked for me or not. I was also still coughing stuff up, so was also afraid I was sometimes coughing up the medication.

By Friday, I had only seen slight improvement, rather than the significant feeling better that she had predicted, so I called back the office to express my concerns of the film coating and coughing up the medicine and asked for a chewable or liquid form of the antibiotic. I was apparently convincing as even though I never talked to the doctor, she did prescribe the liquid amoxicillin. I was frustrated because I felt like I was two days behind where I should have been at this point.

I did get a chuckle reading the patient portal notes from when I called and asked for the chewable form. It included “Pt stated she ‘do not have a stomach’ Believe pt is referring to having gastrectomy.” Yeah, duh!

The good news is that I’m not sick very often. The bad news is that since I’ve had very little experience with being sick post-TG, I’m not good about knowing what I need. I also have no idea if it would have been different if I had seen my normal doctor. I know none of this no stomach thing is common and we’re learning together.

I did also ask MD Anderson about the film-coated tablets. I appreciate their explanation and again, I want to repeat it here for my own use and anyone else who might find it helpful:

It would be a good idea if you can get liquid medication.  Please see below on how film coated medication is processed once it is swallowed.  Please take care!

Once a film-coated medication is swallowed, it begins a journey through the digestive system where its coating and the active drug are processed for absorption and eventual action in the body. 

Here's how it generally works:

Stomach Entry: Upon swallowing, the film-coated tablet enters the stomach, which is a highly acidic environment.

Coating Breakdown: Unlike enteric coatings, which are designed to resist stomach acid, film coatings typically dissolve readily in the stomach's acidic environment. This dissolution allows the active drug ingredient to be released from the tablet.

Drug Release and Dissolution: Once the film coating dissolves, the tablet or capsule (if it's a film-coated capsule) begins to break down, releasing the active medication into the stomach.

Absorption in the Gastrointestinal Tract: The released medication then passes through the stomach and enters the small intestine, where the majority of drug absorption takes place.

I appreciate that even though I haven’t been to MD Anderson or communicated with Dr. Mansfield’s office for over 5 years, they are still there and still willing to answer my questions.

Getting on the right meds helped, but symptoms still lingered on. As I reached the end of the antibiotic, I called the office again and they suggested I come back in since I was continuing to have symptoms. 3 weeks into this, I still had some congestion and especially the cough. Sometimes the cough was dry, sometimes productive, coughing up mucus. The doctor said my lungs and everything looked clean. Even though my time period for the antibiotic was finished, with the liquid form, I had a few days remaining so we agreed to finish it out. I was to call back in a week if I didn’t continue to improve or if symptoms got worse. She also said coughs can linger for up to 13 weeks.

I did continue to improve, but slowly. It took about 6 weeks before I began to get my stamina back. Before that, I found myself leaving work early, especially if I had something in the evening. I needed to take a break after work to rest before I was good for the evening. Now at 8 weeks, I’m still not sure I would consider myself 100%, but I’m so much better than I was! I hope I’m done being sick for awhile!

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!

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.

Medication continued and Acid Reflux

A couple of things I forgot to mention in yesterday's post about medication:

After the surgery, I was also prescribed daily injections of enoxaparin.  These injections given into my abdomen on either side of my incision were to reduce the chances of blood clots forming.  Because I refused to poke myself with a needle, I made my husband do it for me.  He would wake me at 7am before he went to work, give me the shot, and then I would go back to sleep.  The last dose was yesterday.  It was nice not having to be awakened for a shot today.

I have suffered with acid reflux for almost 30 years.  Since I now have no stomach to form the acid, we were hopeful this problem would go away after surgery.  It partially has, not necessarily entirely.  I do still have some problems with belching, but don't have the acid as part of it.  One way I know I have eaten enough (or too much) is I start belching.  Since surgery, I am no longer on the pantoprazole that I had taken for years.  I was also told not to take Pepcid Complete that I would sometimes take in addition.  I was told I can take Tums or an equivalent.  There have been just a few times that I have used Tums post surgery if I am belching a lot or if I need help just settling things down a little.  I used to have lots of problems at night when I first laid down, that seems to be much better.  Nice to know there's some fringe benefit to having your stomach removed!

Medication

As you might expect, you have to be careful about what kinds of medication you can take, both prescription and over-the-counter, after having a total gastrectomy.  Since you have no stomach, things like extended release do not work.  You can't take any capsules; you can't take anything with a coating.  The only type of tablet you can take is one that is compacted powder with no coating.  Some people have trouble swallowing pills at all.  I've been able to swallow small ones.  I haven't tried any large ones yet.

Some people prefer liquid medication.  I've had problems with the liquid.  The ones I've tried tasted nasty and came back up.  First of all, I was given potassium as a liquid as I was being released from the hospital.  It promptly ended up on the bathroom floor.  They gave me pills and I was fine.  They sent me home with liquid prescriptions of pain killer and stool softener.  Fortunately, I haven't had to use the pain killer at home.  I haven't used pain meds since the night before I was released from the hospital.  I tried to use the stool softener the first few days, but had trouble keeping it down.  We went to the drug store to get an over-the-counter stool softener in tablet form.  We were very frustrated to find it doesn't exist.  Everything is either a capsule or a coated tablet, nothing I could take.  I eventually decided to just stop taking the stool softener and have done OK.

I also need to take a daily multi-vitamin.  They recommend either liquid or gummy.  I have found the gummy vitamins work quite well.