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Denise’s Story

Site created on August 19, 2023

This journey began in the middle of the pandemic. In June 2020, I noticed a lump in my abdomen. My friend, Tara, ordered an MRI and I was diagnosed with Non-Hodgkin Lymphoma. I started chemotherapy and almost immediately developed horrible ulcers on my mouth and tongue. I had a very gnarly rash over most of my body that itched like mad. My doctors did a zillion tests, but they were all normal or inconclusive. Then I started getting short of breath. Each week, my breathing deteriorated. My doctors thought that maybe it was a reaction to one of my chemo drugs, so they stopped one and just gave me the other one. I kept getting worse. Then they decided to stop my chemo altogether; my cancer tumors were small and not growing. And I still got worse. Nobody could figure out what was wrong. I ended up at Mayo Clinic and received the unwelcome diagnosis of Bronchiolitis Obliterans. It’s progressive and fatal. The only treatment is lung transplant, which they won’t do on somebody with cancer.

So I went to the U, hoping that maybe, just maybe, they would take a chance on me. They said no, but got me hooked up with a giant medical team to help me live as long as possible. I got worse. Through the miracle of being a friend of Tracy’s, I ended up seeing a young dermatologist to try and do something about my mouth sores. Dr. Brittney Schultz, my dermatologist, is the person who figured out that ALL of my problems were from an autoimmune reaction to my lymphoma, called Paraneoplastic Pemphigus. It’s incredibly rare… and I just happened to find the one doctor that had studied it. Dr. Schultz said the way to slow the pemphigus is to get rid of the source: my small, not growing, but still existent tumors. So back to chemo I went, but this time with the big guns. R-CHOP did its job, cancer’s gone, pemphigus is in remission, and the progression of my lung disease slowed down significantly. But, a year and a half post-chemo, my lungs have gotten worse, because once BO starts, it has its own trajectory. Nowadays, the only time I’m not short of breath is when I’m sitting. Absolutely everything that involves moving is hard. The U is not ready to take a chance on me; they’d like to see my cancer in remission for longer. But my doctors were 100% in my corner when I wanted to look for a second opinion. Enter: The Mayo Clinic. The following posts are to keep you up to date on my transplant journey at Mayo.

Newest Update

Journal entry by Denise Joyce — Apr 5, 2024

It takes 6 long weeks to culture Mycobacteria Abscessus abscessus, and I’ve sent in cultures every two weeks since starting the big drugs at the beginning of February. Two weeks ago, I got a message saying my culture from 2/8 said there were still a few little poop heads growing. Boo! I’ve been feeling so good, though, that I just KNEW these cultures were going to start being negative. And today, I got word that my culture from 2/21 was NEGATIVE!! No M. Abscessus after 42 days! My team said they wanted to wait for 2-3 negative cultures to re-list me. So, HERE WE GO! This is such good news! And I know it’s not a fluke because I feel better than I have in months. After basically being homebound all winter, I can leave my house to do small errands. Spring is springing. Life is good. Hug someone today. Thanks for cheering me on. Love you.

Read More of the journal titled "¡Adiós, Mycobacteria Abscessus! Don’t come back, now, y’hear?"

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