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When Life Changed: Cancer and Agency
Many of you have heard my saga about my bout with cancer and chemotherapy; that is only marginally what this post is about. As a result of my experience, I realized that I had made a major change in my perspective about my own agency in a way I’d never known. It was partly inspired by my husband, who is a skeptic about many things but is big on taking responsibility. But I also began to realize that beyond his support, I had to, wanted to, take charge of my own medical decisions, which meant that I was taking charge of my life in a whole new way.
All along the way, there were decisions that I had to make, some easier than others. Almost immediately, I realized that because I had two tumors on my right breast, with some distance in between, it made sense to both the doctor and me to remove the whole breast. Although we agreed, it was reassuring to me that I was using my common sense to make that decision, rather than relying only on his medical training.
The next decision was whether I was going to have reconstructive surgery. I didn’t want it, and Jerry saw no reason to do it either. The surgeon tried to persuade me that I should at least schedule an appointment with the plastic surgeon. Yet I knew I didn’t want the complication of another surgery, one that could be difficult. Since the plastic surgeon was on the same floor as my breast surgeon, I walked over reluctantly to arrange a consultation with him. As I spoke to the scheduler, I said I didn’t see the point in talking to him since I didn’t want the surgery. The scheduler, a wise woman, said another woman had just come in and said the same thing and left without scheduling a consultation, and then she looked at me knowingly. We turned around and walked out. I never regretted the decision.
There were other minor decisions along the way, but one major one came up when the oncologist told us that the current regimen for my type of breast cancer involved six chemotherapy treatments; he mentioned that some people ended up doing fewer because they were struggling with the treatments, but he thought we should anticipate six. So we did.
Along the way, though, the regimen was wearing and debilitating: I received a treatment every three weeks, followed three days later with a hydration treatment. Then there was the regimen of taking pills every day to reduce side effects. Life revolved around cancer, and although I continued with much of my regular routine, it wasn’t easy.
After I completed my third chemo treatment, the chemo nurse casually mentioned that the next one would be my last. I was surprised; I told her that they had told me there would be six treatments. I realized then that at one point only four treatments were likely included in the regimen, and at some point (without any data offered to explain the change), someone decided (for good measure?) to recommend six treatments.
So I made an appointment with my oncologist to discuss next steps: why was I told that six treatments were required when I’d only been scheduled for four? He very much wanted me to go all the way through the process, but avoided giving me details. Meanwhile, I was also concerned about the possibility of peripheral neuropathy, which can cause symptoms ranging from numbing in the toes and fingers to severe pain. What about that possibility? Finally, we made a deal (!) If I went through the fourth chemo treatment without symptoms of peripheral neuropathy, I’d consider the fifth. Well, guess what? Following the fourth treatment, I had numbing in my fingers and toes. At this date, most of it has disappeared, but not completely. Still, I am very glad that I did the fourth treatment; I felt that the decision was worth the outcome of completing the minimal regimen with minimal side effects.
One of my last decisions was scheduling another follow-up appointment with the oncologist; it appeared that those were normally scheduled with the nurse practitioner; however, when I talked to the scheduler, she asked whom I wanted to see. I was unhappy with a number of communication mishaps with the N.P, so when the scheduler gave me a choice between the N.P. and the doctor, I immediately requested the doctor. He will be the person I will see over time.
Finally, throughout this process there had been several communication problems with the oncologist’s office—nothing major, but when you are going through cancer treatment, everything can feel like a crisis. The last mishap was when I called the office to schedule a time with the doctor to ask a question, or even receive just a message through his staff, about whether it would be wise to go back to visiting hospice patients. (I had already tried to send him a message through the patient portal.) When I called, I was transferred to voice mail and I left a message. No one ever called me back. After two weeks I decided to make bereavement calls for hospice rather than visit patients, and I wrote a detailed letter to the oncologist listing all the communication mishaps. I’m not prepared to find a new doctor, because I am convinced of his expertise and I always felt I was treated kindly and respectfully until then, but I thought he needed to know how sloppy his staff was. Although he didn’t respond to my letter, it will be part of our discussion at my next follow-up visit in March.
* * * *
The most valuable change for me over the last several months was in my expanded confidence in myself; that ultimately, I knew what was best for me: I knew my mental strength, my physical condition, and my temperament. I was prepared to practice a more assertive agency in my life. Some decisions are just not that important; I don’t need to take up arms or risk dying on every battlefield. But I now trust myself in a deeply confident, spiritual, and powerful manner, when I am willing to make the final decisions and accept the responsibilities that go with them.
It has been an amazing and gratifying realization.
Published in Group Writing
Doors may shut, but God always opens windows. I am glad that you are recovering and have found deeper meaning in your suffering. May God bless you.
Good on ya Susan! Keep it up and blessings to you!
May God bless you, Susan.
Susan, thank you for this; the sense of agency or control in these most serious of health decisions requires courage–I think for many it is less taxing on their psyche to completely abdicate decision-making to the ‘expert’. Our chemo experience has some similarities though my lung cancer drugs were different than those that you took. I had 4 treatments (chemo cycles), 3 weeks apart, with the rehydration regimen as well. I lost courage, temporarily, after my third treatment–you know the effects of chemo are cumulative and I felt so much worse for so long after the 3rd cycle that I could not face the 4th cycle. I confessed my terror of the upcoming treatment to our prayer support friends–they prayed. A day after my confession and appeal for special prayer I had an experience of overwhelming peace–the last cycle had fewer side effects than any of the previous cycles. I remain grateful beyond words.
When the cancer returned, a year later, it was initially thought to be Stage 3; my oncologist told me that the tumor board would recommend another lung surgery in addition to chemo and radiation. My oncologist told me that he did not recommend further surgery because of the complications from my initial surgery, but he did recommend chemo and radiation. I was going to refuse the surgical option with or without his recommendation–I felt like I was getting set up for piecemeal reduction of my breathing capacity and quality of life and just did not want to have that part of my dying process. Turns out I was Stage 4 rather than Stage 3 which ended up with the most gentle of treatment options. No hope for a cure, but access to a daily chemo pill that I tolerate well and so far has kept the cancer from progressing. I have been on the pill now for 16 months with scans every 3 months to check for efficacy. So far so good! I live fairly normally except for profound fatigue.
I have been told that cancer cells develop resistance to chemotherapy analogously to bacteria developing antibiotic resistance; the hope is that this drug will remain effective until the next generation of drugs becomes available. My wife and I have been fortunate; we have great relationships with the staff at our oncology office–they are like family to us. Blessing on your ongoing health, Susan, your story always encourages me.
Rah rah rah! Go SUSAN!
From many on your cheerleading squad . . .
You and I agree on this, Susan. We ought to exercise our free will wherever we go, and that includes inside a doctor’s office. We’re not children and doctors are not our parents. We are in total control of our bodies.
Some doctors get upset if we show that we have minds of our own. One of my VA doctors would become visibly upset if I even asked a question. I’m not an obnoxious guy. I asked questions with polite deference, but I think he thought I wasn’t giving him as much deference that he deserved. I changed doctors.
I’ve liked almost all of the doctors I’ve met, but there have been a couple who have had delusions of grandeur and who have wanted me to be a toady. I’d rather not be a toady.
And I am so inspired by your story, Jake. The recent mammogram on my remaining breast came out perfect, but I found it interesting that the surgeon (whom I like very much) thought it was a good idea for me to count on seeing him regularly for at least a couple of years. It caused me to wonder about the odds of cancer showing up in the left breast. I was curious, not worried. We can only do the best we can do! I hope your life is full in spite of your fatigue. I sense that you and your wife make sure that is true. Thanks for sharing
Great examples, Kent. I can’t even imagine your being a toady! Since this experience of strength is new to me (to this degree), your story strengthens me, too. Thanks!
Wow. Your story makes me grateful for my oncology team; the communication I’ve had from them is outstanding. They even worked with me through my spine fracture, that had nothing to do with my cancer. Wilmot Cancer Center, University of Rochester.
And you know I’m one of your cheerleaders too. Rah!
Thanks for all your posts Susan. You are inspiring.
Hey, thanks Colleen! I don’t have much choice about my hair: it’s doing whatever it wants! ;-)
Indecision is a terrible thing. Most people who suffer from indecision are simply unwilling to accept the responsibilities that go with the decision. The biggest tell of an in-decider is that they seem to change their mind even without any change in facts. Changing your mind when facts change is only common sense. But most mature adults if presented with facts and having life experience can make a decision. It may not be a happy decision, but that doesn’t make it the wrong decision.
True. But it begs the question, why are so many people, who would ordinarily trust facts and their life experience to make smart decisions, giving those up for Covid? But I digress . . .
G-d bless Susan. It’s good to hear you’re doing well. And nice pictures too. Thanks.
“Courage is being scared to death, but saddling up anyway” – John Wayne. You are courageous, confident and strong, do not doubt it.
This inspiring post is part of January’s theme: “The Time When Life Changed.” Resolve to sign up and write this month.