What Does Getting Better Look Like?

I have been asked more than once what it might look like while I am getting better. The question is not as absurd as one might think -- I have written about how difficult it is to get a sense of a patient's physical well-being based on appearance. The image we project is not always a reflection of how we feel. And on several occasions, I have both looked and felt better while my cancer continued growing inside. And that leads me into the question itself: getting better from what?

Looking my worst while getting better

In some respect, I have looked my worst because I was getting better. Getting "better" from cancer means removing the cancer from your system, after all. It is not always a tidy process, and it can leave plenty of scars, both physical and emotional. I have not had surgery, but I have seen that the recovery may be long and difficult, especially when a major organ is involved. And in many cases, surgery is followed by other treatments that will have their own physical impact and emotional toll.

Every patient responds differently to treatment. The same drug may make one patient lose hair while another grows it out. Because of the uniqueness of our genetics, there is no absolute predictor for which side-effects a patient will experience or how intense those might be.

The way that a treatment wreaks havoc on the surface of the body is not a direct correlation to how well the internal work is going. But that internal work is potentially doing other damage that the body will need to recover from. Which deepens the question of what we are getting better from.

The chance to rebalance

There was a time when I thought that getting better from my cancer would look a lot like getting better from the flu. If my chemotherapy made me look and feel like I was suffering from the flu, that should be it. Of course, cancer treatment, especially for metastatic patients, is rarely so easy. First of all, there are lingering issues, like neuropathy. There are changes that may be permanent, like changes in hair and skin. Or there may be nothing other than the potential for recurrence -- or, as in my case, after years of stability, finding out there is progression.

Getting better in that case suddenly looked the same as getting worse. The wash-out period between treatments, however, might feel wonderful. The body has a chance to rebalance itself, to heal the damage that was done during treatment, even while the tumors inside are able to thrive. I recall looking pretty amazing, highly refreshed and energetic, after getting off my chemo. And over the ensuing time period, in which I tried several other therapies, I had various levels of looking and feeling healthy. Most of that time, the tumors inside my body were still able to grow.

Treatment trade-offs

My most recent treatment has been my most successful, and I would also say it has made me look my most horrific. In just two months, my primary tumor went from its largest size ever to its smallest size since my diagnosis. I would qualify that as getting better. But my body is a mess. It, too, shall get better, I imagine; that should look like weight going back on, skin clearing up, maybe even hair growing back. I would like to see all of that happen, to see the body recover from the treatment, but then there is the matter of what happens next.

Even if I find myself in the coveted position of having No Evidence of Disease, treatment may still continue. And there will always be the threat of return. So, to answer the question as broadly as possible, I hope that getting better always looks good. It may look good on a scan -- smaller tumors or no signs at all of cancer. It may look good on the skin. It may just look good in the eyes of the patient, happy and confident in knowing that there is another day of being able to experience this wide, wonderful world we live in.

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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