Constant Mutations, Small Adjustments
Living with cancer means making lots of small adjustments, continually being ready to modify one's habits or routines. Just as cancer cells continue to mutate and change, so must our daily rituals and expectations.
Rolling with what treatment throws at me
I was recently asked about whether I should wait until after my next scan before making plans for a small trip four months away. Generally, I refrain from making any plans more than a few weeks in advance because I never know how I am going to be feeling or what my energy levels will be that far down the road. But for some things, if they are going to be possible at all, commitments must be made long before I will have any idea what my daily life will be like. In those cases, I realize, I will simply have to be determined to see them through and roll with whatever issues arise. Within reason, of course.
This particular trip was being called into question because I simply do not know whether my current treatment is working, or what the follow-up treatment would be if it turns out that I need to change. In the past, I have been on treatments that were simple to dose oral medications and I have been on some that require regular visits to a clinic where I am hooked up to an IV drip. Taking a pill is easy, and travel becomes slightly less of an issue if there is no requirement to get plugged into a tube. But there is also the possibility of a clinical trial, and if I go that route it might require additional time at the sponsoring hospital for evaluation. If I end up in such a trial, it could impact my ability to go even for a short stay out of town.
Adapt to adjustments and accept limitations
I am always ready to find some sort of workaround. There is only so much that I can control, and my treatment must come first, but life continues to go on. For those of us who chose to participate, we must learn to adapt and to accept our limitations without sacrificing any more than we need to. This little dance is different for every patient and caregiver, but by understanding that adjustments must sometimes be made and some improvisation necessary, the steps need not be overly difficult or even without grace. And, like dance, sometimes this is best a solo endeavor and sometimes it is best with a partner (or even a whole chorus line). After all, even the most independent patient is never truly in treatment entirely alone.
Adjustments, of course, are not limited to big events. Just getting out of bed in the morning may require a change in routine. Nerve damage, even mild neuropathy, might alter a patient's ability to do dishes or tie shoes; these activities do not become impossible but may force the patient to modify how they are performed.
Two sides of new mutations
As patients continue their treatments, the cancer within undergoes its own changes. Mutations arise, sometimes allowing cancer to grow in spite of how effectively a treatment had previously been working. There are two sides to this: on occasion, new mutations open new pathways to targeted treatment, other times these mutations cause new growth that forces the patient to adapt.
My walk is entirely different after radiotherapy to deal with a metastasis pressing against my sciatic nerve. The excruciating pain is gone, but residual effects limit my mobility. Still, I can get around fine -- if I am careful about how I move. And since I no longer have the ability to run, I make sure to leave enough time to get where I am going at my own pace. A couple months ago, I would not even have conceived of this as a possibility. Now, however, it seems commonplace and even mundane. Just one more small change to keep the big road ahead relatively smooth and clear.
Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
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