When I was first diagnosed with inflammatory breast cancer in 2019, I wanted to go to MD Anderson. They have a dedicated team for inflammatory breast cancer patients and because they see such a high volume of cases they’re more experienced with inflammatory breast cancer. I was told that insurance wouldn’t pay for it. I could only receive care in my state and nothing would be covered outside of that area. This was so frustrating. At the time I was overwhelmed with first being diagnosed and all the information that was being thrown at me. This was the first time I was having to advocate for myself as a cancer patient and being just a regular person not involved in the medical system, I didn’t know the in and outs of health insurance, treatments and standard of care.  

Thankfully, even though I couldn’t get care coverage out of state, I was connected to the IBC Network and Terry educated me on standard of care for IBC. Because of Terry when my first surgical oncologist started talking about my mastectomy procedure I realized she was refusing to do the surgical procedure that was and is standard of care. I knew from what the IBC Network had told me that a radical non-skin sparing mastectomy with lymph node removal was necessary for the survival of inflammatory breast cancer patients. She told me she didn’t do that. She told me even though I didn’t want reconstruction that I would “change my mind” and want to get reconstruction done. I realized at that appointment she was doing what she wanted to do with no regard for the process specific to inflammatory breast cancer or my wishes. I fired her and I chose a surgical oncologist in Seattle. The Seattle surgical oncologist happened to be a breast cancer survivor herself. I remember the day I met the oncology team at Fred Hutch in Seattle. I asked the surgical oncologist what she planned to do for my mastectomy and as she described the standard of care procedure that was necessary for IBC tears just started flowing. I had finally found the right person to help me and she cared. She was educated on inflammatory breast cancer and she didn’t lead her practice with her ego.  

I completed treatment in 2020 and was NED. Then I got COVID in 2022 and within two weeks my tumor markers skyrocketed after being in the normal range monthly for years. They continued to climb and I was diagnosed with a stage 4 reoccurrence.  

In 2023, while still in treatment for stage 4, I started getting the nudge to switch health insurance and it kept coming up over and over, but I didn’t know how to do it. In the Fall of 2023, this was still on my mind. I had gone to MD Anderson and paid out of pocket for the whole appointment. I was in a tough spot and realized I needed a second opinion. It was stupid expensive, but after that appointment I became aware of the need to have the MD Anderson oncologists as part of my team. The gentle nudge became loud after that.  

Shortly after the trip to Texas, my husband and children and I were in Hawai’i and our trip was having to be cut short because I couldn’t get care in Hawai’i. We had to leave and come home early for chemo. We stopped by an art gallery during that trip and the woman working at the gallery was a cancer survivor.  We started talking and she shared her cancer journey. I explained I was in treatment and why we were leaving Hawai’i early. This beautiful woman named Jill with grey hair and wrinkles from enjoying the sun and smiling her beautiful smile, she looked at me and she said, “You have to figure out how to get chemo here. You WILL figure it out.” That changed everything. I believed her. 

I researched online and tried to find how to switch and then ultimately I was guided to a financial planner. Even consulting with an expert in the health insurance field I was still terrified of something happening and not having health insurance coverage. The financial planner guided us and assured us it would be ok and that he had worked with many others over the years that had done this. I was still so skeptical and I grilled him, but ultimately I knew we had take a leap of faith and trust him. It worked.  

It took me over 5 years to get over the fear of a lapse in health insurance. Making that change made me realize that there are so many things that we come up against. Some things are out of our control, but other times we might have fear or just accept that there isn’t another option or another way. We don’t know that things can be different. We might think that all doctors are the same. We might assume that surely they all know and practice standard of care. We might assume that we would be told other options by our oncology team if there was another option for insurance or different medications. It’s an assumption I made when I was first diagnosed, but I quickly learned that is not the case. Navigating a cancer diagnosis and health insurance is complicated. It’s not an easy process. You must educate yourself and if you don’t know where to start just reach out. Ask. Doors will open.  

This process made me look back over the years of treatment and all the things we missed out on and had to reschedule because we couldn’t leave our home state and deviate from my chemo schedule: canceled flights, canceled trips, canceled experiences and memories. It got me thinking about all the things we accept when we’re afraid of change. What do we not take steps towards out of fear? Why do we keep pushing back the things we want because we accept this is just how it is? What about all the little things we tolerate also that we don’t really enjoy or like? We’re still alive! We should seek what we love and what brings us joy and if that includes making changes to the current oncology team or health insurance we owe it to ourselves to find a way.  

It took me years to fire another oncologist that schlepped into the exam room like she’d been on a frat party bender. She literally would roll her eyes when I would ask a question. She would dismiss and gaslight my concerns, but I didn’t and couldn’t see a better option until I finally said, “Enough!” We all have different levels of tolerance for being treated with less respect, kindness or care than we deserve. Oncology care is a battle for your life. You should feel you have support. You should trust your team. You should feel heard and seen. You should feel that your team actually cares.   

It’s the entrepreneurial spirit in me that says there’s always a way and even for me it takes time with some things. Fear will have you focusing on the worst case scenario instead of trust, which says, “There’s a better way and it will all work out.”  

Now I have an oncology team in Washington, Texas, Mississippi and Hawai’i. This allows us to visit family and places we love and not be limited by my chemo schedule. ”Where there is a will there is a way,” as they say. Planning for the future and doing things that bring me joy is some of the best medicine. When I asked my new Hawai’i oncologist what else I could do to help improve my health, he said, “Keep doing what you’re doing. Travel. Enjoy life.” Doctor’s orders I plan to follow.