I called my doctor a couple of weeks ago and refused the latest round of oral chemotherapy to treat my terminal neuroendocrine cancer. I didn’t refuse it because I have given up. I have not quit fighting. I simply know that at this time it is not right for me. There are three reasons I gave up chemotherapy for right now, first it is not curative, secondly, I’m sick and tired of being sick and tired, and lastly it is hard to live passionately when you can’t leave your house.
The Chemotherapy Prescribed Was not a Cure
I have a rare disease. All of the treatments I receive are essentially palliative, that is they are designed to reduce the symptoms of the illness. If I am lucky, these treatments willslow down tumor growth. I take a monthly shot that reduces my symptoms and slows tumor growth, I will keep taking that shot. There are a few treatments in the FDA pipeline that have shown some results in reversing the disease, at least temporarily, but they are awaiting approval. The new treatment, much like the old treatment, was an oral chemotherapy pill that comes in a haz mat bag to be taken daily and has a list of side effects that can be overwhelming. Great things like explosive diarrhea, nausea, and bone crushing fatigue were in store for me once I began taking it. Sound’s great, huh? During my last series of oral chemo I literally had every negative side effect on the bottle, including getting pneumonia and with the exception of “death,” that I could get. Knowing that the treatment has a 0% chance of curing the disease and only a moderate (10-15%) chance to cause any sort of regression, I decided that the risk of debilitating side effects was not worth the tradeoff. This was my decision, and may not be right for you (or your relative). Those of us with these chronic and terminal diseases have to be able to make the best decisions we can, with the information we have, for our own particular circumstances.
I Am Sick and Tired of Being Sick and Tired!
I try really hard not to complain and to be consistent about speaking hope and wholeness into my life and the lives of others. As such, most of you have no idea that I have been seriously struggling since October 2015. In October I began to have some pretty serious pain and occasionally a fever or other digestive symptoms that are too gross to share. I went to my oncologist who referred me to a surgeon who ordered all kinds of really awesome and fun tests and scans. My favorite required me to swallow a mud flavored substance the consistency of bad milk and they they follow it through your digestive system while you are contorted into the most awkward positions imaginable. Yum! This revealed that my primary tumor in my upper small intestines was causing some blockage and my gall bladder was seriously inflamed, partly due to the shots I take to manage the disease. It is awesome when the treatment for one thing causes something else!
After spending October and most of November dealing with the symptoms and tests/scans, we scheduled surgery to bypass the tumor and remove the gall bladder the first week of December. What a treat way to spend my birthday week! The two-hour surgery turned into a four-hour surgery and the three-day hospital stay turned into almost a week. The gall bladder was much worse than they had anticipated. All of this to say that I spent the rest of December and a week or so in January slowly recovering and dealing with not being able to eat much of anything. I had severe lactose intolerance, and lots of other food issues while my system adjusted to the “new normal.”
In January I also started a new oral chemotherapy. The first couple of weeks weren’t so bad but as the chemical built up in my system I began to get serious digestive symptoms, my hands and feet swelled, I broke out in a rash, just to name a few. The oncologist reduced the dosage in hopes of controlling the symptoms, which did improve some but serious fatigue was still an issue.
In February, while still getting used to the meds, my beloved sister-in-law died suddenly. I was honored to officiate the funeral but it was very stressful for my extended family. That same week my mother began receiving Hospice care and permanently moved in with my sister. In March my mom died and I helped arrange and officiate at her funeral as well.
The icing on the cake was that in April I got pneumonia, a rare but not unusual side effect of the chemo med I was taking. I ceased taking the chemo pill while on antibiotics and something miraculous happened, the veil lifted. I had not realized how poorly I had felt taking the meds until I stopped for ten days. It was like somebody opened the blinds and let the sun poor into my soul.
My oncologist decided that the previous medicine wasn’t working for me after a scan that revealed that, despite all the side effects, my tumors were still growing. We discussed several options and she prescribed another oral chemo pill that would begin in May. I drove home and began dreading the next round of cancer chemistry experiements.
Wanting to Live Passionately
It is hard to live passionately when you can hardly leave your house. Due to some complications with my health insurance required mail prescription service there was a delay in getting the new chemo pills. The longer I went without the oral chemo the better I felt. Every day I felt stronger, and the world began to look bright again. I was able to get more done (like the crazy kitchen project Danelle and I have taken on) and was eating and sleeping better. I could ever drink a milkshake or eat ice cream without getting sick! That is when I made “the call.”
I contacted my oncologist’s office and the pharmacy and declined the new chemo meds, at least for the summer. I love the summer. I love sunshine, warm weather, and outdoor barbecues. I love going to the beach, smelling the salt air and watching the sunsets. I knew that if I started on the meds I would spend another couple of months trying to tolerate a whole new set of side effects without any hope of a cure and very little hope of any positive progress.
In our culture we talk a lot about “quality of life,” but we usually trade it for any chance at “quantity of life.” About this time, I began reading The Christian Art of Dying by Allen Verhey, a theologian and cancer patient. I decided that, at least for now, I was tired of being a cancer chemistry experiment without any real hope of being cured (apart from divine intervention of course) and that I wanted to make the most of my time. In order to make the most of my time I needed to feel “like myself” and not the chemo zombie that I had become in January through April. I realized that I had begun to lose myself, my spark, my passion for living while grasping desperately at straws to live a little longer. I am not willing to sacrifice who I am in order to be somebody else, some medical shadow of myself, for a little more time.
This is a decision I made for me. It is not medical advice. I do not know where you are, what treatments are available to you or your loved one. This was a profoundly personal and spiritual issue for me that I prayed about and continue to pray about. Then I talked it over with Danelle to make sure she was okay with it. Then I made “the call.”
It takes courage to go through with chemo, it takes courage to stop it. I once heard that being courageous was not the absence of fear, rather it is taking action despite the fear. I am giving up chemotherapy, at least for the time being, because I am committed to living passionately every moment I have left. I will not be defeated by cancer, or death, because my healing has already been paid for by the sacrifice of my Savior. Whether it is here or there, my healing is secured.
That is why I quit chemo…at least for the summer.
Gracious God, who walks with me through the valley of the shadow of death, give me the strength to live passionately today and trust you with tomorrow. In the name of the One who provided for my healing, temporal and eternal, Jesus I pray. Amen
Here is more about how Danelle and I view this journey: