January 30, 2021Journal Entry by Sheryl Schabel — January 30, 2021
BACKGROUND
This journey began in mid-October 2020, in the midst of the covid-19 worldwide pandemic. I ended up testing positive for covid (mild case), so had to be quarantined accordingly. While the covid had nothing to do with what came next, it provides a back-drop in this almost comical chain of events.
A few days after my quarantine ended, a pain in my right lower abdomen began. Gas, I thought. I moaned and groaned throughout the night and the next day. When I finally got off of work, I called my doctor, hoping to get in. I described my symptoms to the nurse, and she told me to go immediately to Urgent Care. So, to Urgent Care I went. After a CT scan showed my appendix had burst, I was admitted and carted away into emergency surgery. I was in the hospital for 4 days, spending my 58th birthday there. Because of covid, I could only have one visitor per day, so it was a very quiet birthday...very out of the ordinary! The nurses were sweet, and had the kitchen staff make me a tiny birthday cake! 🍰
On a side note, 3 weeks earlier, my grandson Max had an emergency appendectomy...with the same surgeon! I joked around, telling everyone I got mine from Max! HaHa! 😋
On November 10th, we were at the hospital again...only this time it was because Andy was getting a scheduled hip replacement. The surgery went well, and we were sitting in his room afterwards when I got a call from the surgeon's nurse. She said the pathology report had come back and the surgeon wanted to meet with me to discuss it. I hung up the phone, turned to Andy, and said, "THAT can't be good!"
Two days later I sat in the doctor's office listening to the results of the pathology report. My appendix had a cancerous tumor, I was told, that grew too large to be contained in my appendix. That resulted in the bursting of my appendix. The report showed that the incision area where the appendix had been removed had cancer, so we knew there was cancer still inside of me. It had spread to the end of my colon. So on December 9th, I underwent a right hemi-colectomy, the removal of a portion of my colon, along with surrounding lymph nodes. After 5 days in the hospital, I went home.
Within 2 days of being home, I had an outbreak of shingles across the right side of my back. Over the next several days, it traveled to my right side and a bit on my front. Oh, the pain was terrible! Anyone over 50 years old should get that shingles vaccine! I honestly thought I had the shot, but I guess not! My doctor prescribed a medication to help "calm down the nerves" and lidocaine cream, and that helped, but I was still in constant pain and got little sleep for weeks. I tell people I'd rather deal with cancer than shingles any day!
It was the hope that the colectomy surgery would remove all the cancer, and that would be the end of it. Not to be so. On December 21, I got the call that the pathology report came back, and once again, I needed to go in and discuss the results with the surgeon. I learned that 4 of the 26 removed lymph nodes contained cancer. The fact that there were only 4 brought on the hope that it had not spread too far, but it had spread, meaning chemotherapy was in my future. In addition, and unexpectedly, the report also showed that when the tumor burst my appendix, it sent microscopic clusters of tumor cells throughout my abdomen. The pathology report showed 3 of these cluster cells had attached to the specimen that was submitted and had been growing. It was expected there were more inside of me, resulting in the suggestion for referral of a lesser-known type of chemotherapy called HIPEC. There are not very many cancer centers that do this HIPEC chemo, but luckily UW-Madison was one of those research centers that had it available, so I would not have to travel far.
So, on January 6, 2021, I finally met with an oncologist from my Dean medical care plan. He explained that my cancer, Goblet Cell Adenocarcinoma of the Appendix, was very rare...so rare that there had not been any group studies done on it. (Andy's response: "You just have to be different, don't you?" 😇) The doc said that while he would be referring me for the HIPEC chemo to address the clusters of tumor cells that had likely been flung about after the appendix burst, I would still need to undergo the traditional chemotherapy to address the lymphatic system. That would take 6 months. So, the thinking would be HIPEC first, traditional second.
After the appointment, I was reading the doctor's notes in My Chart, and one thing was noted that we hadn't discussed. The report gave some statistics: 3 years after HIPEC chemo, there was a 43% rate of patient still be disease-free, and a 63% rate of the patient still being alive! Having actual statistics sort of hit home. But, my attitude the entire time has been "Thy will be done." I have faith and am not afraid.
On January 19th I had a virtual appointment with the UW-Madison oncologist to discuss the HIPEC chemo. I have to be honest and say my understanding had been that the procedure involved laproscopically inserting tubes into my abdomen and flooding the abdomen with chemo fluid and an overnight stay in the hospital. So, when he mentioned "major surgery" a first time, second time and third time, I stopped the flow of conversation and asked what this would entail, and explained to him what my understanding was. "No!" said he, and proceeded to tell me that it was a 5-7 day hospital stay, in which he would open me up from breastbone to pubic bone. He would then pour hot chemo fluid into my open abdomen for 90 minutes, making sure every nook and cranny was filled. I was not prepared to hear that. I felt there was no way my body could endure that surgery right now, as still having the shingles told me my immune system was still suppressed. I told him my thoughts, and he agreed with me. He felt my best bet would be to wait 6-12 months and he would re-evaluate after the other chemo was finished. Because we knew I was a high risk for having other tumor clusters (I refer to them as barnacles...Andy calls them shrapnel!), we weren't positive there were any because we couldn't see them. Waiting to see if anything grew would allow for a better evaluation as to whether the HIPEC would actually be needed or not. Whew! I do not want to do that if it ends up not being needed!
I also had a CT scan today of my heart, ordered by the oncologist prior to starting chemo. Results: "A solitary 5mm nodule in the right middle lobe is nonspecific. This could represent a benign nodule, but given the patient's history, attention on follow-up imaging is recommended." In the great words of Winnie the Pooh..."Oh, bother!" 🍯
I contacted my primary doctor about both the shingles and the covid vaccine, as it was my hope I could get both prior to the start of chemo. Since I still had the shingles, I knew I could not get that vaccine while I had an active case. Her response was that she understood my fear the the shingles would reactivate, but that it was not life threatening...the cancer was. I needed to get going with the chemotherapy. Sigh. As far as the covid vaccine, I would need to speak to the oncologist about whether that could be taken while undergoing chemo or not.
On January 27th, I met again with the Dean oncologist. I asked about the covid vaccine, and he said it should be fine to take the vaccine while undergoing chemotherapy after the first few weeks, letting my body adjust first. So that question is resolved. Next question: what about that nodule on my heart? He said he wasn't too worried about that, but that he would have it checked out a bit down the road. Ok, I'm good with that. 👍
He then explained to me about the chemotherapy I would be undergoing, side effects, how the port worked, etc. I am scheduled for the port to be surgically placed under the skin near my collarbone on Monday, February 1st, followed by chemo on Wednesday, February 3rd. It will take about 3 hours and I will then be sent home with a pump for 2 days. After 2 days the pump will be removed. This will occur every 2 weeks for 6 months. Sounds easy enough. 😏
I will post updates as this journey continues. I believe the best thing anyone can do for me is to pray, so thank you for all your prayers. Keep 'em coming! 🙏
It's been several months since I've updated my CaringBridge account, and it is time to do so. The school year closed out without incident, and I reveled being back. I do so enjoy my job! As soon as all the transcripts were updated (mid-June), Andy and I joined his brother Chris, wife Maria, and friends David and Debbie on a fishing trip to Canada. It was SO relaxing, and we all enjoyed ourselves. (I will try to get some pictures posted in the gallery soon.)
Because our school is under construction, we were kicked out the last day of school and cannot return until the end of August, so I've been working from home. I could get used to sleeping in until 15 minutes before I start!! Saving SO much $$ on gas, too! (I normally spend 1.5 hours on the road going to and from work.)
In mid-July, my sister Pam hosted the Larson family reunion at Lakeside Park in Fond du Lac. It was so wonderful to see my aunts Mary and Martha, and my awesome cousins that I hadn't seen for a long time, plus nieces and nephews! We had representation from the east coast and the west coast! Lots of wonderful memories!
More memories to come, as Andy and I will be joining his mother and siblings in upper Michigan for some fun times. When we leave there, we will be heading to the Apostle Islands to spend our anniversary hanging out with my cousins. Looking forward to it!
While in Canada, I noticed some signs that made me think something was wrong medically. I had an appointment set up with my oncologist upon my return, so I brought it up to him. He ordered a CT scan, which was due anyway. The CT scan showed that my mid- and upper abdomen areas were clear where the HIPEC surgery was performed, which was good news. However, it also showed 3 small pulmonary (lung) nodules - too small to do anything about at this point. We will watch them to see if they grow, The CT scan did not show anything pertaining to my lower abdomen, which is where I was thinking something was wrong. A biopsy of the area came back as tumor on my cervix. All 3 specimens from the biopsy showed it was my original cancer (Goblet Cell Adenocarcinoma of the Appendix), as opposed to cervical cancer. Cervical cancer would have been better news. Sigh.
I will be consulting with specialists in radiation and surgery to get information to determine which method would be the best option to pursue. Surgery would take me out of commission for another 7-8 weeks and my doc said it would be difficult given my scar tissue from previous surgeries. I really don't want to go through that again! However, my cervix could then be removed, and they would have a visual to see if any other tumors were in the area, so I will consult with them and get the information.
Radiation, on the other hand, will either kill the tumor or get it under control. I will likely do radiation, as I can do that while still working.
Unfortunately, my oncologist fears that this is the tip of the iceberg. He said he could be wrong, but in his experience, this type of aggressive cancer will show up again and again. Plus, he is very concerned about the 3 pulmonary nodules. Well, I guess my thoughts are we can't spend effort on worrying about the future, because we don't know for sure what will happen. We will have to cross that bridge when (and if) we come to it and deal with each fire as they come. I will be here until God decides I shouldn't be, and not a moment longer. I'm okay with that and I "offer it up." Jesus, I trust in You.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Sheryl Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Sheryl's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
