Angie’s Story

Site created on January 24, 2022

Welcome to our CaringBridge website for Angie's health condition. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

To say the least, Fall 2021 was a rollercoaster of ups and downs for Angie and family. It started in mid-September with Angie testing positive for COVID. On the surface, her symptoms were mild and she got through it generally unscathed; however, emotionally and mentally it proved to be a challenge with keeping her distance from Nathan and Lyla for 10 days and Lyla being out of school for two weeks.

In early October, Angie went through a planned surgical procedure to repair her abdominal wall and an umbilical hernia that she has been living with since giving birth to Lyla over seven years ago. Apparently, 9 lb 9 oz babies aren't easy on mommy tummies. The procedure went as planned and Angie spent two days in the hospital for this.

Mid-October came around and Angie was recovering from her surgery well; however, she started dealing with persistent nausea, upset stomach, and hunger but without the ability to stomach much of food. On October 25, Angie had a follow up with her surgeon and although her abdominal healing looked great, he looked at Angie and immediately said she had jaundice. Labs were taken and the next morning, Angie was told to go to the ER.

October 26 in the ER started with more labs, an ultrasound, and a CT scan. Prelim results showed she had a backed up/blocked bile duct but no evidence of gall stones, so the plan was to go in and open up the bile duct with placement of a stent via an endoscopic procedure (ERCP). Angie was admitted to the hospital that day and later on received some difficult and unexpected news. The CT scan came back and they saw a "mass" on her pancreas. So the ERCP turned into a procedure to open up her bile duct and also to take biopsies of her pancreas and surrounding tissues. The ERCP went routinely, two stents were placed (one in the main bile duct and one in the pancreatic duct), and several biopsy samples were taken. Angie spent another two days in the hospital and eventually went home feeling much better after her ducts were draining properly, but then the waiting game began as we waited for the biopsy results that wouldn't be available for almost a week.

The following Wednesday, November 3 we had a scheduled meeting with the GI doctor to follow up on the procedure and hear the biopsy results. We received the best news we could at the time as the results came back negative for cancer. So what then was this "mass" they were seeing? The doctor then said it was likely inflammation and/or scarring on the pancreas and we were down the path of calling it autoimmune pancreatitis; a chronic condition where the body's immune system attacks itself (in this case the pancreas). Steroid treatment was prescribed to knock down the inflammation and scarring and Angie was on the road to recovery.

November went by fairly well; Angie's appetite and stomach issues were closer to normal, though she did have some lingering back pain that the doctor attributed to the pancreas being angry. We've learned that the pancreas may be the most sensitive organ in the body when it comes to being poked, prodded, inflamed, or scarred...it doesn't like it and will let you know via back pain. Early December continued with positive recovery and Angie started to ween off the steroid treatment. It was also time to start thinking about removing the duct stents that were placed as they were only temporary fixes, and that was planned for immediately after the holidays in January. However, by mid-December Angie's back pain began to increase, likely due to the decrease in steroid treatment. The doctor decided we should move up the stent removal procedure sooner than later and we had that scheduled for Wednesday, December 22.

December 22 came and Angie had her second ERCP to remove the original stents and to do more biopsies as a precaution. Procedure went routinely, additional biopsies were taken and the doctor said that the pancreas scarring had actually gone down quite a bit (less than half the size it was when he first saw it). So good news and Angie was back home later that day. Early the next morning however, Angie felt horrible with nausea, uncontrollable chills, and light headedness. So back to the ER and her labs showed that her bile duct was once again blocked and once again Angie was admitted to the hospital to monitor her condition and for another (third) ERCP to place a larger, more durable/long-lasting stent in her bile duct. The procedure went routinely again and thankfully her condition improved quickly and Angie was able to go home mid-day on Christmas Eve. The family spent a nice relaxing Christmas weekend at home and planned to go to the Ellingson cabin the following week for some winter wonderland fun.

The following Tuesday, December 28 came and Angie received a voicemail from the GI doctor's nurse, wanting her to come in to see the doctor. Angie asked what it was all about and ended up receiving a call directly from the doctor with news that changed everything. The second round of biopsy came back positive for lymphoma. Prelim results called it diffuse large B-cell lymphoma, a type of non-Hodgkin lymphoma, and it was later confirmed to be just that. Angie's GI doctor actually considered this almost a better outlook as the previous autoimmune pancreatitis condition, as nH lymphoma is very treatable and many people are essentially "cured" after undergoing treatment. As encouraging as that might have been, Angie now having to face cancer is a challenge that none of us could begin to be prepared for.

After a relaxing New Year's winter weekend at the cabin, Angie had her first of many tests to set the stage for what she is facing. Over the course of that week, she had a PET scan, a bone marrow biopsy, an EKG, and placement of a "port" that would be used to administer chemotherapy, as that had been identified as her treatment. PET scan results came back to show where and how much lymphoma Angie has and it was seen in parts of her abdomen, chest, and within/around her liver and pancreas. This is then considered Stage 4 non-Hodgkin lymphoma. As scary as that sounds and is, Angie's prognosis given to her from her oncology group is positive and her treatment will consist of six rounds of chemotherapy, administered every three weeks. Her first treatment was on Thursday, January 20 with subsequent treatments through early May 2022.

Angie is a fighter. She is stronger today than she has ever been. There will be tough days ahead, but she will get through this. I know it, she knows it, others know it. Please keep her in your thoughts and prayers.

Newest Update

Update

Journal entry by Angie Ellingson —

Nathan, Lyla and I had a wonderful trip to Yosemite National Park at the end of August- it was incredibly beautiful and I highly recommend going there! When we got back I had a follow up with Dr Kumar, my oncologist, and everything looks good. However, I mentioned to him that I had been feeling really itchy all over for several days. He checked my liver bloodwork and noticed that my levels were elevated again and he sent me back to see Dr. Bhatti, the GI doc that has been placing the stents. I ended up getting another stent put in my bile duct as the itching and bloodwork pointed to a blockage of bile, causing my liver to not work the way it was supposed to, and he said that he had to dilate it with a balloon to even put the stent in. Symptoms immediately resolved, but the question is why this keep happening now that the cancer is gone.

Last week I had a specialized MRI of my liver and bloodwork, and yesterday I saw Dr Bhatti to go over results. Thankfully there was nothing in either that he felt was concerning, other than what we already know. He suspects that there is scar tissue left over from the lymphoma that is just in a really unfortunate place such that it blocks the bile duct. The short term plan is to leave this stent in for up to 6 months (unless it gets blocked or infected) and then take it out and see what happens. If the duct blocks again he will put in another, larger stent. He is hopeful that this will eventually resolve on its own and that the duct will stay open without a stent, but there is no way of knowing for sure. We did talk about long-term plans and the possibility of surgery at some point if the scar tissue continues to cause problems, but the surgery is incredibly tricky and specialized (he only knows 3 surgeons at the U and Mayo who even do it) and so it is not something we are jumping on at this point. 

The good in all of this is that I know the symptoms to look for and placing a stent has worked every time, so at least we know what to do. It's frustrating that I am still dealing with this but I trust Dr Bhatti and I am comfortable with the plan. 

Happy fall to everyone, and thanks for continuing to share this journey with me!
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