Desmoid tumour with MaryBeth Eiler

Chantal Boyle:

Joining us today on The Sunflower Stories is MaryBeth Eiler and Lynn Smith from across the pond, depending upon where you're located. So they are stateside in America. MaryBeth, let's start with you. First of all, whereabouts in America do you live and can you tell me a little bit about it?

MaryBeth Eiler:

Yeah. I live in Central Indiana with my husband, our dog, and soon-to-be first child, we're expecting and due at the end of the year. So we're really excited about that.

Chantal Boyle:

Congratulations.

MaryBeth Eiler:

Yeah. So we love living in the Midwest. There's lots to do here. Lots of places to hike, and that's sort of how we enjoy spending our weekends. Professionally, I run a small business working part-time as a marketer and freelance writer. And then in addition to that, I share words of hope in healing for people who are journeying through the unexpected on a website that I started amid my own health battles.

Lynn Smith:

Can we ask, what are your health conditions?

MaryBeth Eiler:

I was diagnosed with a desmoid tumor in 2016, which is located in my left calf and have had multiple recurrences of the tumor since diagnosis. A desmoid tumor is an extremely rare condition affecting about three to five per million people. While it is considered one grade below malignant, the tumor's highly aggressive and therefore, that's why it's treated like cancer for many patients. There's currently no FDA-approved treatments for the disease, making treatment very much trial and error. But after two years of extensive physical therapy, leg braces, a different form of surgery on my ankle, my mobility has been restored to a near-normal state, but last October of 2020, my tumor did show signs of growth once again, but being that I'm pregnant, we're currently just monitoring everything. So the future's a little hazy right now. We know that treatment is in my future at some point. We're at a phase that we think we'll definitely make it through the pregnancy without needing to intervene. So extremely grateful for that.

Chantal Boyle:

You mentioned that you experience anxiety. Is that indirect link to the tumor that you've had and the journey that you've been on with that, or is that like a preexisting condition?

MaryBeth Eiler:

I would say that it has come from the diagnosis of my tumor. Life changed so much in a very short period of time. There's just such a new normal to have to adjust to when you receive a diagnosis like this. And of course, there's not many answers and I think that can cause a lot of anxiety with so many unknowns. Even now, knowing that in the future I'm going to have to pursue treatment again, I know there's limited options available. So there's just always a little bit of underlying anxiety when living with this type of disease.

Chantal Boyle:

When did you obtain a diagnosis? And you said that it's a very rare condition that you've had. What led you to get the diagnosis? When did you sort of first start to think, "Something isn't quite right here"?

MaryBeth Eiler:

I would say I had pain in my leg for over a year before I really got serious about dealing with it. But when I did finally get to the doctor, she rushed me through a series of tests. So that day that I went in, she measured my calf. It was about an inch in diameter bigger than my right calf, which looking back, it's like I can't believe I didn't realize that. I can't believe I couldn't tell that. But again, I just think it's the naivety of you don't think it's going to happen to you, especially when you're 25. So yeah, I rushed through a series of tests, like an ultrasound, an MRI, had a biopsy done, and within a week, I received the confirmation of my diagnosis.

Chantal Boyle:

That's really quick. [inaudible 00:04:15] anybody receiving a diagnosis of anything in such a short space of time. So you must have been relieved that you could know what it was and then sort of try to then, with your doctor and your healthcare professionals, work out what would be the best appropriate course of action. You went from having a desk job, office-bound I presume. How did your daily life change?

MaryBeth Eiler:

In the very initial worst days, I had a really supportive work environment that allowed me to work from home. So I literally just laid on my couch with my leg propped up and had my laptop kind of like on my chest and working the best that I could. And then slowly as I started treatment, I was able to come back into the office with the aid of a scooter and a crutch. I kept one scooter in my car, one in the office so I didn't have to drag them in and out. And yeah, I had really supportive coworkers, a really supportive boss, which made a huge difference in those really critical days.

Lynn Smith:

What do you think about a symbol such as the hidden disability sunflower in the program? When you heard about it, what were your thoughts about it?

MaryBeth Eiler:

I think the symbol is just so important in that people never really know what others are going through. It is impossible to know what we're all facing, whether it be physical, mental, whatever, we all have struggles that we deal with. And I think we need greater awareness around that fact. I think it's easy to believe that it's a really small percentage of people dealing with a hidden disability. And I think it's much greater than people actually realize. And I just know, personally, it's changed my day on many occasions when people just do something small for me like hold open a door, because maybe I was exhausted and it's just like that little gesture can just go a long way in turning somebody's day around. So I think the sunflower brings awareness to that and it truly makes a difference into providing support to those who need it.

Chantal Boyle:

And do you feel then that it is needed in society today?

MaryBeth Eiler:

Yes, absolutely. There's no doubt about it. There's so many applications I can think of, but yeah, just knowing that all you have to do is have a sunflower and people just... It has a symbol, it's a meaning of something unspoken. It's a huge blessing for people with hidden disabilities.

Lynn Smith:

Yeah. And you don't feel like it's self-identifying in a negative way, correct? It's a very positive thing to be able to choose to wear it when you want to.

Chantal Boyle:

Would you mind describing what it's like to have chemotherapy and what impact that has on your body and your mind?

MaryBeth Eiler:

The first one was in oral chemotherapy. So I just took it every day. And I remember when I got it in the mail, which is so strange to receive such a powerful drug on your doorstep. I remember I got it, I opened it at the kitchen table, and my husband and I just sat and stared at it because it was such a bizarre thing to think like, "Okay, I have to put this in my body, but I know it's a powerful drug." I was only on that for about three months when we realized that the side effects were too significantly affecting my daily life and it didn't seem like any improvement in my tumor.

            And then we started an intravenous form of chemotherapy. So I would just go to the office once a month. My doctor would check me out, I'd get blood work, make sure everything was okay, and then head back to the oncology unit where I would just be hooked up to an IV. My treatment lasted, I think about two hours each time when I did it. So that's pretty short compared to a lot of other forms of chemotherapy. A lot of people have four to six-hour treatment windows. Overall, I feel like my body handled it really well, which is making me optimistic should the time come when more chemotherapy starts. But every new form of chemotherapy has different side effects. So it's very much just kind of a toss-up on what's going to happen to you.

Lynn Smith:

So what are your hopes and plans for the future?

MaryBeth Eiler:

Pertaining to desmoid tumors, my hope is to continue advocating for a cure or at a minimum, an FDA-approved treatment that's accessible to all patients with this disease. And personally, my mission is to simply encourage others who have faced a similar path in life or one they've never expected, which is what I hope to do through my writing. And like I said, I lived with this disease for two years before I met somebody and it can be really lonely. And I don't believe anyone should have to walk this journey alone. So my hope is to make it a little less alone for them.

Chantal Boyle:

Well, it brings me to say thank you so much, MaryBeth, for your time today.

MaryBeth Eiler:

Well, very nice to meet you. Thank you so much for having me, really appreciate it.