Traveling for Treatment
Last updated: May 2022
In 2016, I was put into a position where I had to make a difficult decision. The lung cancer was growing, and I was at a point where my doctor gave me three options. I vaguely remember the conversation but it included a note with words scribbled on it.
The option that we chose
The option we chose was to have the tumor sent out for a broader mutations panel to see if there were other drivers making cancer grow. I waited what seemed like forever but it came back that on top of the EGFR mutation the tumor was also high with a MET amplification. This was wonderful news and my oncologist knew exactly what I needed to do. She told me about a clinical trial at Dana Farber cancer center in Boston. We had already planned to go see my sister in Texas and added this onto our trip and flew straight to Boston from Texas.
The beginning of my diagnosis
I started getting treatment at Northwestern in Chicago. It was sometimes a difficult trip going into the city to the hospital that I sometimes felt driving to Midway airport and then flying to Boston Logan was easier. I started the clinical trial around January of 2017 and completed it almost a year later due to progression.
When I was diagnosed in the beginning my friends and family pulled together and had a fundraiser on my behalf and the funds from that were used to get me back and forth from Chicago to Boston. It also helped that the clinical trial sponsor reimbursed me for travel, taxis, hotels, and food.
At the beginning of this, I was working full time but had taken a lot of time off. I decided while I was traveling back and forth that I would take a few months off from work and so I ended up taking about 8 months off. Looking back, I did not use this to the full advantage that I could have.
My experience at Dana Farber Cancer Center
Dana Farber cancer center is where I was diagnosed with a fracture on my shoulder and hip. They tried giving me a wheelchair but because we were traveling declined it and I took a cane home instead. Because of this, I boarded the flights early to allow myself more time.
Traveling for treatment
While in Boston we stayed at a few different hotels and most gave us a medical discount. Most of the nights we were able to get booked through the hospital but there were a few nights that we had to find a hotel ourselves. I remember one time we procrastinated, and all of our normal hotels were fully booked. We ended up at a super ritzy hotel and it was nice but was expensive for the amount of time we were there.
I never went to Boston by myself. I could have but I didn’t. My sister went with me for almost all the trips. My mom and husband also went with me a few times each.
We found that it was the easiest when only one of us had a bag and we never checked luggage. I was questioned once by airport security for not having a bag. We would fly in on a Wednesday and then fly back home the next day after appointments. We needed very little luggage.
Making the most of my treatment traveling
While we were in Boston we would sometimes venture out and get snacks and drinks. We even went to dinner on the nights that I was feeling well. My sister and I did a little sightseeing and went on a boat tour in the summer, that was fun!
All in all, I would travel again if needed.
Happy Lung Cancer Awareness Month! What does self-advocacy mean to you?