As a result of the Tumor Board discussion on Tuesday, it was determined the best course of action for my case is to pursue 28 radiation treatments over the course of five and a half weeks. The treatments will target my lower esophagus and upper stomach. I will continue with chemotherapy during the radiation treatment but possibly in the form of two pills a day instead of my typical infusion but we have yet to confirm this. I refer to this as “Infusion Confusion”, mostly because I am confused.
Random Thoughts by Matthew Manuel
- Show of hands, who likes Munchos Potato Crisps?
- Will radiation turn me into the Incredible Hulk?
- I have never seen a single episode of the original Baywatch series.
- I didn’t try Chinese food until I was 19 years old.
- I have a headache, right now and if it isn’t gone by 8 am I am going to eat some fried rice and PhotoShop my face on David Hasselhoff.
- I need to quit eating potato chips.
- If I could actually turn into the Hulk, my brother would be super jealous.
The Good News
Dr. Caster said, “you shouldn’t have survived this long based on Stage 4 Esophageal cancer statistics”. The fact I have survived this long, of course gives hope to not only me, my family and friends but the oncology team at UIHC as well. Dr. Caster spoke of how the team sees my case as unique. He also used the word “peculiar”. And both of these statements were followed by encouraging words.
When I was diagnosed, I wasn’t able to get my lymph nodes biopsied due to location and lack of safety. My original PET scan in June 2018 revealed significant uptake in my lower esophagus and two specific lymph nodes, one near my heart and lower esophagus and the other, miles away in my pelvic region. My chemotherapy has been aggressive the past six months and both of these lymph nodes are now “dead” (Dr. Caster’s words). They have shrunk and no longer show uptake.
Based on the “Shrinking of The Nodes” (possible future band name), the oncology team is impressed, surprised and hopeful. Radiation will target my lower esophagus and upper stomach area. What are the side effects? Let’s discuss.
The Bad News
I am scared shitless. Radiation treatment for esophageal cancer is designed to specifically target the lower esophagus and stomach. I have to undergo breathing therapy (deep breath so my chest expands as I lay still during the treatment). They told me a pipe organ is involved with this process (more to come on this in a future post). I look forward to making music! (I don’t think it works that way)
Why am I scared? I am scared because this treatment could adversely affect my heart, lungs and possibly my spinal cord. There is a low risk of each but time was spent discussing how it affects the heart. It is common for patients to have a cardiac event in the 10-15 years following radiation. It is also somewhat common for the radiation treatment to cause another type of cancer in the years following. For instance, I am Stage 4 which means I will always have cancer. Radiation can cause another cancer in the future so I would not only have esophageal cancer but possibly stomach, liver or lung cancer, for example.
A tracheobronchial fistula is also possible. This is where an abnormal connection (fistula) between the esophagus and the trachea occurs. Emergency surgery to resolve the issue is required. This scares me the most.
Stomach ulcers are possible and very serious. I will be taking antacid pills every day to combat this (along with my reflux medicine).
I have to drive to Iowa City five days a week for five and a half weeks, for radiation treatment. I will be provided valet service. This is good news.
Who Wants To Ride Along?
Once I get my schedule, I plan to reach out to anyone who is available on specific days where Angie can’t take me and I can give my mother a break. She will argue “it is no problem” and I believe her. She has been a trooper through all of this. I just don’t enjoy feeling like a constant burden and nothing anyone says to me will change that feeling. It is very common with cancer patients and natural. I am also independent to a fault.
Mom will read this and feel the need to repeat “it is never a problem” and once again, I believe that. But I feel what I feel and I also may want to see a few new shiny faces on these tedious trips down I-380, the highway of young people staring at their phones while racing 80 mph to get to their respective cube farm careers.
Someone may suggest I take the 380 Express bus. Here are my thoughts on that: no. I have been on a lot of charter buses in my life and rarely did I think the driver was adequate for the task. Why do so many bus drivers think they are on a NASCAR track? It is a nonstop anxiety attack for me. Not gonna do it. No bus rides!
I have a scan this afternoon to prep for radiation. Thanks again for following along. You are all wonderful and important to me in this journey. I may be scared but the love and support I feel balances it all. I am eternally grateful.