Greetings From Rochester

December 17, 2023

I am writing to you from my hospital bed at the Mayo Clinic here in Rochester, MN. It was quite the whirlwind ending up here and there are still a lot of unknowns, but I wanted to update you on the current leg of my journey. To do that, I need to reflect on some of the past portions of the s4 thymoma and myasthenia gravis (MG) diagnosis and treatments.

Some Backstory

As you may remember, I had some long-term complications stemming from the original 11/26/19 sternotomy (open heart) surgery used to try to remove the thymoma (cancer of the thymus gland; original control system of immune function) from my body. During that surgery, doctors were able to remove the bulk of the cancer and also scraped out the lining from the inside of my entire chest cavity to try to get any extra rogue cells that might have planted themselves there. They removed some of the veins in my chest, some nerves, and part of my pericardium. These extra steps to try to prevent future cancer regrowth did not come without side effects.

Following that, I had no voice and difficulty swallowing due to removal of laryngeal nerve which controlled the left side vocal cord causing it to be paralyzed open. I also have a paralyzed left diaphragm due to either removal or damage to the left phrenic nerve, causing breathing issues and a partial void where the left lung should be filling. Another complication was my superior vena cava (SVC) needed to be partially removed and resected with bovine tissue. This was also true for the left brachiocephalic vein. Eventually, neither of these reconstructed bovine tissue veins lasted.

One good thing that came from the initial surgery was that it seemed to alleviate symptoms related to the MG. In the beginning, it was the MG symptoms that lead me to the discovery of the thymoma. Those symptoms were mostly muscle and energy related but were extreme and life threatning.

In January 2021, I underwent surgery in my neck to pull a non-critical nerve going somewhere else from in my spinal cord and the attached it to the vocal cord nerve. After about 8 months, I started getting some voice back. Hooking the nerve into it didn’t create movement of the cord but it stimulated it to bulk up allowing for the right side to make contact, so now I have voice. Yay!

Unfortunately, in the months following the original surgery, some new thymomas started popping up around the lining of my chest and lungs. This was what they tried preventing but since thymoma has a tendency to “spray paint” when cut into, it sprayed its nasty little cells around inside to cause harm later. Over the course of the past 4 years, I’ve had different types of chemo treatments 4 separate times, and radiation treatments 3 separate times. The most recent being in 2022. Since then, we have been watching the growth and waiting for the right time to act again.

Striving For Better

Starting the summer of 2022, I have been slowly incorporating various healthier habits into my life and changing my diet to better support my body and help fight the cancer naturally. It was working and showing signs of improvement, more so when I was managing stress good. But, as a busy working mom, wife, farmer, firefighter and person going through critical health issues, it is sometimes hard to manage the stress. The months where stress was high, the growth would be more. This is my PSA to tell everyone, please be good to your body and try to reduce stress in your life. It is not good for our bodies.

Fast forward to July of 2023, I had a little incident following fighting a house fire where my chest started feeling worse with a lot of pain. I got in to see my vascular doctor at Mayo in August and he said it was time to do something about my SVC since it was nearly closed off. This main vein going into my heart is supposed to be larger than my thumb but was shrunken down to less than a toothpick. We scheduled a procedure for 9/25/23 to place a long tube type stent made with Gore-tex material to open it back up. The procedure went well, and the device is holding up. However, everything started to change after it.

When Crap Hits The Fan

After the stent procedure, I began having random unpleasant symptoms that I had never had before. Some of them I would chalk up to post surgical immune response and general side effects. Then I started having muscle pain in my arm muscles and thought maybe I was coming down with something, but I never got sick. Then the pain advanced into my legs and joints as well, so I started getting concerned that maybe cancer had spread to my blood or bones. I messaged a couple doctors about it, saw my local clinic doctor mid-November and had labs done but they were not too concerned. I was, though and I knew something wasn’t right.

As the days went by, it started getting hard to walk around and the pain in my arms and legs were at times unbearable. I pushed through the pain most days and tried not letting on what was happening and hoped it would go away. I know this sounds weird but despite all the scary symptoms I was having, I was in the best shape of my life. I finally looked like someone who wasn’t sick. I was strong, my immune system was top notch, I felt more clarity in my brain, and I haven’t even had so much as a sniffle since December 2022. But still my body was declining quickly.

Following Instincts

During these past few months, I felt little urges to do special things with my family due to the nagging feeling that I might not ever have the opportunity to do them again. (This I believe was my intuition telling me to get help) I was able to take two short trips away, one with my daughter and our best friends and another with my husband and his family. These were amazing and so special in their own ways, but I just have to say there is something about a beach and sun that cannot be beat! I also bought Vikings tickets for my family for Christmas, so we got to experience a live NFL game since my boys love football. Unfortunately, it was not a good game. But it’s the Vikings. What do you do? Haha! Thankfully, these little things temporarily helped me mentally cope with the underlying scary things happening.

Looking for Answers

On December 7 and 8, I had routine scans and appointments scheduled at Mayo Clinic. This time my doctors got to see what I was talking about in the messages to them. I was bordering on being immobile, in tremendous pain, very stiff and swollen. They ran some extra labs that showed something seriously wrong with my muscles. Being that we didn’t get the results until around 6-7pm Friday night, my oncologist said to go home and that they would try to get me in the next week. I rested all weekend and first thing Monday morning he called to tell me they were able to expedite my visit and that I needed to be back Tuesday morning for a day filled with tests. They were thinking it was possibly an MG flare, but it felt different to me.

December 12, 2023

After resting for the previous 3 days, much of the swelling went down. Still, Tuesday they ran many labs, performed EMG test, echocardiogram, and consulted with several specialists. At the end of day while seeing my oncologist for the final time and going over the results of everything, he told me I needed to be admitted to the adjoining hospital to start treatment immediately. They were able to rule out MG (not sure if that is good or bad) but said there is something new happening to me. I’ve been in the hospital oncology inpatient care since Tuesday receiving two different IV infusions, one in the morning and one at night to try to stop the damage to my muscles. Even today we are still not sure what exactly is happening or why but there is a treatment plan to try. Some of what they’ve discovered is severe myositis, pericarditis, and a pericardial rub.

Since this was all unplanned, Jesse went back home on Wednesday to be with the kids and take care of things there. I have had my plate full of visits from specialists all week, so it hasn’t been too awful being alone. I’ve seen specialists from oncology, cardiac, vascular medicine, rheumatology, infectious disease, neurology, PT, MRI’s, etc. I’ve lost count of the amounts of pokes, prods, IV attempts and changes I’ve had. If it didn’t suck so bad, it would almost be funny.

My nurses and doctors have been pretty great, though. I even was gifted a new Bible and prayer shawl from one of the sweet chaplains here. The food hasn’t been bad either. They have a really good salad selection. One thing they definitely need to work on is their Christmas decorating abilities! The tree is pretty sad to look at, especially for an oncology floor.

The Hypothosis

At this point, we are thinking all of this has to do with the stupid thymoma. It could be a result of having a strong immune system. Thymomas like to be in charge. They don’t like to be attacked. While my immune system was strong, it was likely taking aim on the thymoma which in turn made the thymoma angry. In response, the thymoma uses its memory of the immune system control to turn my strong immune system against myself, instead of itself. I must have scared it pretty bad because it decided to take aim on the largest and most important system in my body, my muscle system. Since our brain, heart, lungs and pretty much every other part of our body is run by muscles, that is a big deal. In the beginning of my journey, I only referred to the thymoma as the intruder because I did not welcome it in my body. The more I am discovering, the more fitting the name seems so I will start using that term more often again.

The Current Plan

As of this morning, I just finished my 5th infusion of IVIG. I am new to this so can’t really explain it yet. I think it is clearing out the toxins in my blood from the muscle damage. I’ve also been on extremely high dose steroids to wipe out my immune system so that it will stop attacking me and hopefully allow my muscles to repair. So far, my physical symptoms are somewhat improved meaning I gain mobility with rest but as soon as I start moving around the stiffness and pain come back. My labs look a lot better though, so this leads the team to believe we are on the right track. I just need to rest a lot to allow for the muscles to heal and not get more damage.

The next step is they want me to start chemotherapy to attack and slow down the intruders. The start date is up in the air at the moment, but they talked about either this Tuesday or the day after Christmas. Either way, the plan is for weekly infusions for two weeks along with a take home chemo pill 2x per day for two weeks and then take one week off. If I handle it well and things seem to be going in the right direction, we will continue that for 6 more weeks and then rescan and test muscles. If it does not show improvement, we will be back at square one and try to figure out something else. Chemotherapy is not something I enjoy doing and was hoping to avoid longer but at this point, I hope it works out and I can start recovering. Doing something feels better than nothing.

This evening, I will be released from the hospital but need to stay in Rochester to finalize my schedule tomorrow morning since I don’t know if chemo will be this week or next. They are sending me out with new prescriptions and rules so life will be different for a while. I am sorry this is such a long report, but it just is. It’s like we are working on a1000-piece puzzle but there are still 444 missing pieces. 😊

So Much Gratitude To Give

First, I want to thank God for guiding me along this journey. I truly look for signs from him every step of the way. He is my rock and my shelter. He has been using the number 4 as a guide for me all thoughout this whole journey and I have been seeing it everywhere! The number 4 (44, 444) actually represents protection and spiritual guidance. When I was admitted on Tuesday, I was nervous at first. Then they told me I was going to be on the 4th floor and down to the 44th station. I immediately felt calmer. It was quite amazing!

Second, I need to thank and give a special shout out to my children! My kids have been through so much and even through all of this, they work so hard in school, and each get on the honor roll. My 16-year-old was just inducted into the National Honor Society. My boys kicked butt in their varsity high school football season and now they are rocking the basketball court. My daughter excelled on the volleyball court and moved up a level and is holding strong in her faith and attending confirmation classes. They have a great support group of friends that I am so thankful for. They are also helping hold down the fort at home and take care of each other when Jesse and I are both away at my appointments. I am bursting with love and pride for them.

I also want to thank everyone who has been following me on this journey. It’s hard to explain but I fight harder because of you. I fight for my family, for my friends and for strangers. I hope that my story will help others with theirs and encourage everyone to trust their instincts and never give up. Some days are harder than others, it’s true. Just don’t give up.

I want to give special thanks to everyone who has been reaching out to me on Facebook, Messenger, texts, and calls. I got to have a few chats with some of the dearest people I know. It really means so much to me. Knowing how much you all care is almost more than I can handle but I love you! I apologize for not being able to read and respond to many of the messages due to the whirlwind that has been going on. In the coming weeks I will have more downtime and I promise to go back and read each one. I will be on strict low activity requirements for a few weeks anyhow.

I want to thank my dear friends, Stacy and Amy, and my sister, Hannah, and her family for coming to see me in the hospital, to bring me some necessities and of course joy. You guys really made my stay brighter and easier! Thanks to Jes for facetiming me during my boys’ basketball game so I could watch from afar. It was really hard on me to not be there. Thank you to the friends and family who have picked up food for my family back home. The hardest part is not being able to be there for my family and take care of them like a mother should. Thanks for stepping in! Now my sweet mom is on her way down to help with the discharge process and help get me into a hotel for the night. After the schedule is finalized, Jesse will be back down to get me.

Thank you all again so much for following and supporting me and my family! We love you and hope to give you good updates in the near future!

God bless you,

Pauli