Seth's Info

I had an excellent visit with my brother last week, and we traveled into New York last Thursday for my 2-week checkup. Driving into the city was a nice change of pace from my usual train trip, and we didn’t encounter too many problems. My blood pressure has finally come down a bit, it’s been elevated since I started Sorafenib. I also seem to be maintaining my weight reasonably well (still around 155 lbs).

In many ways the last 10 months of my life seem like an eternity, and yet they also seem to have flown by. I have spent over 40 days in the hospital, had two major surgeries (both unexpected), had radiation treatment, undergone 6 rounds of chemotherapy, had several blood transfusions, had dozens of scans and x-rays, and had more blood taken than I would have thought possible. Jenny and I have met many doctors, nurses, and medical staff and have gotten to know some of them well. One of the nicest and most helpful people we have met is a social worker at Fox Chase. When my oncologist there recommended that we speak with a social worker I sort of laughed at the idea, thinking “why would we ever need a social worker?”. I couldn’t have been more wrong. Navigating the world of cancer treatment can be overwhelming, even to an internet-savy person committed to educating themselves. Aside from determining the best course of medical treatment (which is a challenge in itself with sarcoma), there is a complex world of medical insurance, disability insurance, social security, medical record management, and cancer support groups that can quickly overwhelm even the most determined patient. I’ve been lucky to have Jenny deal with the majority of this stuff, and readily admit I strongly dislike dealing with any of it.

We met Anjali, a social worker at Fox Chase, during one of my first chemotherapy sessions. She immediately began to educate us on the various programs and services available to cancer patients. While we are lucky to be financially stable and have solid medical insurance (many cancer patients are not so lucky), there are still programs available to help out people like us. For example, the American Cancer Society provides up to $300 per year for travel expenses associated with receiving cancer treatment. In addition, Anjali became our advocate within the hospital, directing us to the correct staff when we had questions, and often filling out hospital paperwork for us and getting various administrative matters resolved quickly. When I was in the hospital, she visited me nearly every day and would always have some tips or helpful advice for whatever was bothering me that day. Needless to say, I have gained a new found respect for what a social worker can provide to a cancer patient -- not just assistance in financial matters, but a friendly face in a scary environment and an advocate in a complex system.

The biggest impact Anjali has had on our lives is related to the “Surprise” I mentioned in my last blog entry. During one of our first meetings, she mentioned an organization called Crossing the Finish Line (CFL) which is located in the Philadelphia area. We had never heard of it, so she quickly filled us in. CFL is an organization that provides young cancer patients an opportunity to escape the world of cancer treatment through expense-paid week long excursions. One of the most common destinations is Walt Disney World since the organization owns a house on the outskirts of Orlando. At the time (this was late May) we thought it sounded great (and too good to be true, really), and Anjalie helped us apply. To qualify you have to be a cancer patient aged 25-49, reside in Pennsylvania, New Jersey, or Delaware, and have a medical recommendation. Happily, we were accepted into the program and told the coordinator that a trip to Disney would be perfect for our family with 3 kids. The big problem, of course, was picking a date that would work. I was in treatment and having all sorts of issues and it seemed like an impossible task to “predict” a week when I would be available and up for traveling. After my stomach/esophagus surgery in September, Jenny and I decided to just pick a date and see what happened. Originally, we scheduled a date in late February, but were later able to schedule a week in late January. So, the big news is that we are planning on traveling to Orlando a week from today for a 7-day trip. We just told the kids this weekend, and they, of course, are just ecstatic about it. It’s been hard “keeping the secret” but I have been reluctant to commit to going until we knew there was a good chance I would be physically up for the trip. Honestly, I still have major reservations about traveling since it wears me out so thoroughly. But this trip is extremely important to me and my family, and I feel honored to have been selected by CFL. The amazing thing is that CFL provides airfare, housing, rental car, tickets to the parks, and spending money – it really is all expenses paid. They own a 3 bedroom house in Davenport, FL, less than 30 minutes from the parks. Because my ability to go to the parks will be pretty limited, my parents will be in town as well, staying at a nearby hotel. They will be a huge help in keeping up with kids. If I spend most of the week at home, that’s OK. We should be receiving all of our tickets and travel arrangements in the mail this week, which will finally make the trip seem more real. The CFL website has lots of good info on the organization, and even has pictures of the house in Davenport. So my eternal thanks to Anjali at Fox Chase, and Mimi at CFL for setting up this amazing trip, it will be a great respite for our well-deserving family.


So we’ll be getting ready for the trip this week, and I’ll be sure to post again before we leave. If anybody wants a set of Mickey Mouse ears, let me know!

Take care,

Seth