Jill Carnahan’s Story of Overcoming Cancer and Autoimmune Disease

Ari: You have a new book coming out shortly. I don’t know if it’s going to be days before or days after we release this podcast, but right around the release of this podcast. The book is called Unexpected. This is an unusual book. This is not a run-in-the-mill, typical, let’s say, diet book, How to Lose 10 Pounds in a Month and blah, blah, blah. This is a different thing and it’s very much centered around your own personal journey. Tell us what inspired this book and what it’s all about.

Dr. Carnahan: I love that framework because I’ve got wonderful, wonderful colleagues’ books here, How to Fix Autoimmunity in 30 days or whatever else, and I knew that those have been so helpful in my journey. Again, I have a whole library full of them here, and there’s a place for that. What I wanted to do is bring practical information in that way, but what I’ve learned over the years is story is our powerful human connection. It’s the connective tissue between each of us. I am not unique, we all have a story. I envision this really telling, I’ve been through a lot of illness and overcome a lot of things myself, and I really felt strongly that I needed to tell my story and my journey.

The hope is that as I tell that story and that journey, that the reader would actually just see themselves. It’s more of a mirror than really about me. The trick is that it’s actually hopefully reflecting something in your journey that resonates or something in your life or illness or whatever journey that you’ve been through, where you can take some of the hope or healing or practical advice. It’s like two in one. It’s a prescriptive memoir, which means I tell my story pretty in depth. I’m very vulnerable and raw about what I’ve learned. I had this idea that environmental toxicity is such a big deal.

We need to go and talk about the environment and how it affects our health, but as I went through my journey and my own experiences, I realized there’s relational toxicity, there’s childhood trauma, there’s toxicity on so many levels. This book really dives into all the levels of not only environmental toxicity, mold-related illness, cancer, autoimmunity, et cetera, but also how are we in relationships? How are we in relationship to ourself? Or how do we deal with childhood trauma? I share my own journey and healing from these things, but then on the sidebars, we have really practical tips like, how do you know if you have mold exposure? What are the top labs to get by the time you’re 30? Really practical tips that are woven in there as well.

Ari: Let’s dig into some of the specifics. First of all, tell us about your story. What is the story that you wrote about in this book about your life?

Dr. Carnahan: I grew up on a farm, one of five children, pretty idyllic childhood, and was surrounded by brothers, a hardworking German farm family. I loved life, was happy and healthy, and I decided to go into medicine. I knew I wanted to be a healer, and I actually was much more of the heart of a naturopath, so I knew that there was natural ways and methods, but I ended up going to conventional medical school. I just felt like right now the reimbursable system in the US is still primarily allopathic medicine. I wanted to really learn that model well so that if I needed a shift or change or do something bringing in integrative medicine, I could do that.

I went into medicine knowing that I had a much more holistic approach, but that I still wanted to learn the best that the conventional system had to offer. In my third year of medical school, just a week after my 25th birthday, I found a lump on my left breast. I probably would’ve ignored it. Just 25, 25-year-olds don’t get cancer, probably know where the story is going, but I ended up having mammogram, ultrasound, all the workup. It was suspicious, and I had a biopsy, and my surgeon called me a week after my biopsy and she said, “Jill, I don’t even know how to tell you this, but you have aggressive breast cancer.”

At that time, Loyola University was my medical school, that’s where I was diagnosed, and my teachers actually treated and assessed me. I was the youngest one, this is 20 years ago, that was ever diagnosed at that time at Loyola. It was a very big of an outlier and surprise for everyone, and I was in the battle of my life. I knew as a young woman, my chances of survival were very grim. All of us know people who have breast cancer, family, friends, we’ve all been touched by this disease, but a woman in their 60 to 70s, it’s a whole different disease. It’s usually very slow growing. It can be life-threatening, but in a 20-year-old, it’s a death sentence.

It’s such a death sentence that I often share I was in a group of young women under 40 in Chicago at the time that [unintelligible 00:04:30] breast cancer diagnosis, and I am literally the only one still living. I went in for the battle of my life. I ended up doing three-drug, very toxic doses of chemotherapy to treat the breast cancer in multiple surgeries, I had a radiation. Nine months later I came out and I was bald, I was malnourished, I was so sick from the chemo, but I had overcome cancer. I went right back into my rotations. I learned a fun word for bald called glabrous. I thought that was so much nicer than saying I was bald. It means hairless. [laughs]

It was much more fun to say I’m glabrous than bald, and I was completely hairless after the chemo and went right back into my rotations. Again, I told you the story on the farm. I grew up in the stoic, hardworking German pull it by your bootstraps, don’t complain, work hard, all great stuff. It helped me become who I am, but I had no idea of really understanding my body, what I needed, and even being kind to myself. It was like, no, screw that body, you’re going right back to work. I went right back into rotations, actually incredibly sick from the chemo and the medicines.

Those next six months I was so sick, I don’t even have a lot of memories of that, but I was right in rotations and working my butt off. I had started having fevers, started having worse weight loss, abdominal pain. One of the things that chemotherapy does is that it attacks rapidly dividing cells, so cancer as well as the gut lining, so my gut was pretty much destroyed. I remember one night in the ER, I’m on ER rotation, I literally passed out in the ER as I’m taking a patient’s blood pressure. I ended up in the hospital that night for emergency surgery for an abscess that they found.

The next morning I wake up, the surgeon’s coming in to check on me, and he said, “Jill, you have Crohn’s disease.” I was like, “What?” Six months after the cancer. Crohn’s disease is an autoimmune disease where the body attacks its own gut lining. It can cause granulomas, you can have weight loss and pain and fevers, and that was me. I didn’t know that I had it, but all of a sudden I’m facing the second of life-threatening conditions still in my 25th year of life. I was like, “What in the world? What happened here?” Now, the story is so interesting because it makes sense.

I had a genetic predisposition that I didn’t know about called NOD2 that made me more susceptible to basically the microbial inhabitants of my gut triggering autoimmunity, and then some of the drugs I had for chemo actually induced intestinal permeability, so they caused more leaky gut, so all of a sudden the bacterial content started dumping into my bloodstream after chemo. My Crohn’s became active and all of a sudden my body was attacking the gut lining. It makes sense. It was a perfect storm. Also, unbeknownst to me, I had celiac disease, I didn’t know it. I was eating gluten, and I went to the gastroenterologist after my diagnosis to talk, “What’s the deal here? What do I do?”

He said, “This is lifelong. It’s incurable. You’re going to need steroids, immune-modulating drugs, and you’re probably going to have part of your colon removed over your lifetime at some point.” It was pretty dismal, and there’s no cure. In my heart and mind, this is where I started to go from my scientific bioengineering background to going into that heart space and be like, “That can’t be right.” Right before I left, I literally said, “Doc, I’m willing to do anything it takes. Does diet have anything to do with this? Is there anything I do with my diet?” He did not pause for a second, he said, “Jill, diet has nothing to do with this.”

Ari: [laughs]

Dr. Carnahan: Now we know better, and part of my story is how diet helped to cure me from Crohn’s disease, but in my intuition, I was just a 30 medical student. I didn’t have a lot of nutritional background, but I was like, “That doesn’t make sense. That doesn’t even make logical sense.” I went on a journey, did some research. I found specific carbohydrate diet, which at that time had been shown to reverse or help Crohn’s and colitis. I thought, “What do I have to lose?” I changed my diet and within two weeks, my fevers were gone, my pain was gone. I wasn’t cured, but I knew that I was dramatically altered by diet. I kept going on that journey and really learned how to heal my gut, and 20 years later, I don’t have Crohn’s disease.

Ari: Wow. Amazing. Diet does matter after all?

Dr. Carnahan: Yes. Crazy, right?

[laughter]

Ari: Who would’ve thought?

Dr. Carnahan: I can actually pull studies now that show diet and Crohn’s actually really does matter, so the science has come around 20 years later, but at that time, the science hadn’t caught up with what we thought could be true.

Ari: I’ve heard many similar stories of people with cancer, for example. I’ve heard actually a few horror stories of people with cancers asking their oncologist, “Doc, does diet matter at all to healing this cancer or my chances of recovery?” I remember one story in particular where the person told me something to the effect of the doctor told them, “Diet doesn’t matter at all. You could literally eat candy bars and McDonald’s, doesn’t make a difference.” Literally said so.

Dr. Carnahan: Wow. You’re like, “Are you kidding me?”

Ari: It’s pretty crazy. Hopefully, Crohn’s is an example of how things are starting to change in that regard.

Dr. Carnahan: Yes, and that really opened the door for me learning the gut, learning autoimmunity, because there’s a lot of similar patterns in autoimmune disease in general, and obviously the gut, the microbiome, and how it affects our whole body.

Ari: The chemo treatment for breast cancer, was it effective for you?

Dr. Carnahan: Yes. It’s interesting. This is actually relevant. Anyone listening, facing illness and they’re trying to decide decisions, here I am in medical school. I have access to the best medical libraries in the world, and I was faced with decisions about my treatment. First of all, I’m the youngest they’ve ever diagnosed and they have standard therapy for 50-year-olds, but not for 25-year-olds, what do we do with her? They gave me a plan, and what they did, they chose to be incredibly aggressive. One of the drugs they took actually to the maximum lifetime dose before you have heart failure.

I’ve had, so far, and I can never have that again because I had such a high dose that it was like right up to the threshold for your body weight that could cause heart failure. The second drug– so it was doxorubicin, Cytoxan, and 5-FU. The Cytoxan now, like I told you, we have studies that show Cytoxan or cyclophosphamide actually induces intestinal permeability, and that dumping of intestinal contents through the gut lumen into the bloodstream is one of the things that pokes the immune system and triggers cytokines that fights the cancer. Obviously, it makes sense of why they did that, but for me, it definitely contributed to the Crohn’s diagnosis, because all of a sudden my gut was permeable.

We had all this microbes and my body’s like, “What the heck,” and it started attacking itself. Now it makes perfect sense. What I was going to say in the beginning was I had to make a decision and there was no precedent for my age, my type of cancer, and what to do. I remember back then taking all the data and being overwhelmed and I was in medicine, so I can’t imagine those listeners, those people who are facing these treatment decisions. It’s a hard, hard thing. What I promised myself was, at that moment, at 25 I was going to make a decision.

No matter what I decided, whether it killed me or whether I survived or whether I had lifetime effects of the chemo, which I have, I would never, ever second guess my decision because I took the best information that I had at that time and made a decision and moved forward. I do believe it saved my life. It was so toxic, but I also have never regretted the fact I have an immune deficiency now, and it’s probably partially because of the chemotherapy. 20 years later, I’m still dealing with the side effects of that toxic drugs on my system, but I don’t have regret because I learned so much. I survived. There’s lots of good that came out of it.

Ari: Okay. Now is this where the list of medical problems ends or are there more to add to this story?

Dr. Carnahan: Oh, no. [chuckles] Ari, I’m like a guinea pig. I had to learn everything the hard way through experience. I was doing fine after that. I ended up moving to Colorado, starting my own functional medicine consulting practice. Started running, hiking, skiing, all the things I loved, my hair crew back, and 2013 there was a massive flood in Boulder. We’re starting to see all these climate change events all over the world. It was one of those kinds of things where it was like, they called it the 1,000-year flood. Massive, like literally billions of dollars of damage to the towns and the surrounding areas. I remember that day I actually went into work.

It just kept raining, and raining, and raining and the water started rising, and it ended up being this massive flood. I was in this older, probably 1970s building in South Boulder, that was my medical office, and there was a crawlspace right under my office that was never finished, had standing water, flood only made that worse. The basement where I was working also had water damage, and then I had this older office that had old carpet. When we came into remodel, we threw on beautiful bamboo flooring, and my contractor, now I look back and think, “What in the world?” he threw this beautiful new bamboo flooring right over old carpet that was like 20 years old.

Every step I took was like puffing up this old garbage and debris underneath me and then we had water damage, which led to mold growth. Bottom line is I started getting really, really sick the following year. I did not know what was happening. I would have red, puffy eyes, my eyes started bleeding around them, the skin, my scalp got really bad psoriasis, I was exhausted. I couldn’t just get my breath, and I’d been running marathons previously. My lungs, my skin, my immune system, I would get all kinds of infections, I was going downhill. I felt worse at work than at home, but I couldn’t quite put it all together.

I have so much compassion for those facing mold-related illness because there was a piece of me that was in denial in the beginning because I knew if I found there was mold in my office or in my home or somewhere, I had to change homes or move or remediate due to tune of thousands of dollars. There was cost involved. It took me a few months to actually be sick enough to face it head on. What I did at that time was I checked my urine and found there was some massive amounts of mycotoxins, especially the T2, it’s called trichothecene is a really black toxic mold, toxins. They’re now used as chemical warfare agents. They’re really toxic.

I had an inspector, we went down to the basement of the office building and found black toxic mold growing. I had enough knowledge at that point to know that was probably contributing to my illness, but I still didn’t know much about mold. When I found out the results of my urine and my bulk sampling, I literally never set foot again in that office. I got rid of 20 years of medical school box that were in that office and just started over. For a while, I worked out of my home and I had to learn, this is part of my journey is whether it’s learning how to cure Crohn’s or colitis, or learning how to deal with mold-related illness, it started with me.

As a healer, I was sick and I had to figure out how to get well. All of a sudden, by default, I became the mold expert and had to go deep and really learn about biotoxins in our environment, water-damaged buildings, and how profound they affect our health, and how many people are walking around with maybe early on onset cognitive decline or new onset autoimmunity or chronic fatigue or migraines. They think it’s just this label, this diagnosis, but the truth is underneath that there’s mold contributing to that illness.