3 Ways Autism Impacts My Cancer Treatment
Updated Post from 2021
In October of 2020 I was diagnosed with stage three colorectal cancer. The good news is that initial scans showed that the cancer was localized. This means that the prognosis is very good. In fact my doctors told me that “this is very treatable and very curable.”
After several months of treatment and surgery in June of 2021, I went into remission. Unfortunately that only lasted about a year. In June of 2022 I found out that the cancer returned. Then just months later after 26 rounds of radiation, we discovered that the cancer had spread to my lungs.
I continue to hold on to that hope and to the prayers of so many people across the globe that are praying for me and my family.
I will beat this. I’m a fighter. Growing up without an autism diagnosis has somewhat prepared me for this season of life. I know how to face difficult moments. I’m built for this.
This past week I began the first phase of my new chemotherapy treatment. This time around my treatments will last approximately six months. The medication I’m on now is different than the chemotherapy in 2021. I’ve been experiencing side effects that I didn’t have in my first bout with cancer.
To top it all off, about two months ago I had to have an emergency surgery that resulted in me now having a permanent colostomy bag. Although this was an emergency, I was already prepared for the colostomy because when the cancer returned my surgeon informed me that a colostomy would be in my future after the cancer surgery.
Autism informs most of how I experience life. It’s not all of who I am, but the reality is that it is a big part of how I experience With that being said there are a few ways that it has impacted my battle with cancer this far.
1. Social Anxiety. I have trouble meeting new people, making and answering phone calls from unknown numbers. I already have a hard time understanding body language so verbal expressions are the primary way that I understand peoples intentions and the information that they are communicating to me. Covid has definitely put a strain on this ability because of the necessity to wear masks. I already have some challenges with auditory processing so not being able to hear people clearly can cause more confusion. The problem is I can’t afford to have confusion. Cancer is serious and I need to be clear on what I’m instructed to do, so I have to talk on the phone a lot. Like A LOT. Way beyond my comfort level and every time the phone rings I have to answer it even when I am deathly afraid to do so because it may be an important call from one of my many doctors with information that I need. It can be quite anxiety provoking.
2. Sensory processing. In the past I’ve blogged a lot about my challenges with sensory processing. I’ve even made a list of the top ten places that can send me into sensory overload. After this first round of treatment I have to add hospitals and doctors offices. My brain doesn’t filter out unnecessary sounds, smells, etc. This means that every time I set foot in the clinic I am hit with all of the sensory input my brain can handle. The lighting, the sounds, the smells are all overwhelming. In addition I had to lay down on a machine that made noises and rotated around me making noises all while laying on sheets that were itchy and doing all of this face down. It’s a lot to deal with. I’ve also had to allow doctors and nurses to poke and prod my body day after day after day. Did I mention that I don’t even like to be hugged without asking? (although this is beginning to change) The amount of physical touching that I have had to endure has been exhausting.
3. Fatigue. This brings me to the last major impact that autism has had on my treatments, fatigue. Radiation treatments were relatively short. They took around 10-15 minutes to do daily, but the effects caused extreme fatigue. The same is true of this new chemotherapy regimen, but I also believe that a large portion of my fatigue was also the result from sensory overload. Normally I can control my schedule in a way that helps me to avoid the fog and fatigue of sensory overload. Getting treatments five days a week took that control away from me. The radiation and chemo fatigue actually caused an increase in my regular sensory fatigue which actually made me super tired and not just regular tired. I spent a lot of time in bed with the lights out. The combination of treatments and sensory fatigue felt like swimming backwards in quicksand uphill.
Next week I’ll back in the infusion center for chemotherapy treatments. After about four rounds I’ll have new CT scans and a new MRI done to assess the results of the treatment on the small spots on my right lung.
I am grateful for your love and support and prayers. Keep praying and I’ll keep fighting.
Peace and love
Pastor L
