In the Fight of Their Lives: A Caregiver Perspective on Participating in a Clinical Trial

Our guest post today originally appeared on Anne Moore Sabatos’ blog. She and her husband Mike have been married barely over a year and they are in the battle of their lives.  From the “About Me” page of her blog, Anne writes “We were married in November of 2014. Unfortunately, he has cancer, and not just cancer but very bad cancer. The kind that kills you. Cholangiocarcinoma to be exact. Most commonly known as Bile Duct Cancer.”

Anne has been keeping an online diary of their ordeal, sharing a glimpse into their lives with friends and family. Mike was fortunate enough to qualify for an experimental treatment. The post below poignantly highlights some of the hurdles Anne and Mike have faced during a single clinical trial visit, showing us all that a typical day at a medical facility can be a real struggle for folks in their shoes.

Editor’s Note: Certain names and locations have been changed, indicated by brackets.

Anne’s Story

Treatment 7 of the [drug name] clinical trial was yesterday. The big news is that we were able to transfer our treatment from [original site] to [closer study site]. We were driving 9 hours a day to go to [original site] and as you can imagine that was brutal. The expense of the Ohio/Pa turnpikes, gas, and hotel stays when we had to stay overnight were really a hit to our budget. Not to mention the wear and tear on our car. Our car broke down after treatment 5, and had to be towed from Ohio back to Michigan where it sat for a month before we put a $5000 engine into it. The [new site] will be a 6 hours round trip, which is 3 less hours of driving. I tell you it doesn’t feel like it was less today, but I am sure it will over time.

This was our day yesterday- Got up at 6:15am and left our house by 7. We got to the [study site] at 10:30, and got registered. We finally got the lab work done around 12:30.We finally saw the doctor at 2:30 and got treatment around 4:30. We were out of hospital at 5:30 and on our way home. We didn’t get home until around 9 as we made a few stops-once for a Slurpee for my hubby, and once for a takeout dinner for me. We were both so tired when we got home that we pretty much went right to bed. My sweet husband got up this morning and went to work despite very little uninterrupted sleep.

Most cancer patients will tell you that you spend a lot of time waiting. Waiting for diagnosis, waiting for appointments, waiting for doctors, waiting for treatment. It is exhausting. I ate 2 donuts for breakfast yesterday (thanks Bennies Bakery), and then didn’t eat another bite until 3:30 when a kind nurse brought me a sandwich while Mike got his infusion.

First of all, I was afraid all day I would go to get a sandwich and miss the doctor or a crucial piece of information. Secondly, when I finally had a minute to get a sandwich there was nothing open at the [hospital] to get anything. Third, I hate to eat in front of Mike. He is really cool about it, and encourages me to eat but I feel guilty that I can eat, and my dear husband can’t. I try not to eat anything I know he would love in front of him, so I am usually getting something on the run. You would think I would lose some weight doing this but no. I have lost the joy of eating for pleasure, I eat now to keep going. It is no fun to have a meal when your husband is unable to eat and has lost 40 pounds.

The appointment itself went fine. We really liked the doctor. She took lots of time with us, and we really liked her. I had a nice interaction with the scheduler I met at [the site], she was very kind. It is so grueling of a day that you really appreciate the kindness of another human being, or maybe I am just so over whelmed by it all that another human being acknowledging it takes on a greater meaning. I try to live everyday not thinking about cancer nonstop. Of course this is impossible. Then days like yesterday I am bombarded with it nonstop. Watching the other patients, and caregivers seeing the devastation cancer brings thru loss of limbs, loss of hair, loss of privacy, weight loss. The loss of innocence has to be up there in regards to the greatest of losses. You see the devastation everywhere, and the fear. Cancer=loss.

CHEER-MIKE Thank you, Anne, for allowing us to reprint your blog post. You paint a vivid picture of the real struggles faced by caregivers and their loved ones battling cancer the world over. Your perspective illustrates that researchers still have far to go as they strive for patient centricity. And let’s not forget to thank Mike as well, for his participating in paving the way for new and better cancer treatments.  We CHEER for you, Mike!

If you have a story to share with our readers about overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Click here to get started sharing your story now!

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