To Chemo, or Not to Chemo?

The next time I see him, I must apologize to William Shakespeare for taking “To be, or not to be, that is the question” and modifying it for my own purposes. What I’m doing can probably be described by some kind of literary term, but because I’m not a literary writer, I don’t know what it would be. I thought perhaps what I’m doing might be in some sense an example of synecdoche, but after reading a comparison of synecdoche and metonymy I’m not so sure. Perhaps it’s really metondoche, which in itself is actually a portmanteau, and I’m quite certain of that. By now those thoroughly trained in literature are shaking their heads.

Sometimes people try to anticipate what they would do in some particular situation, like “If I get cancer, then I will….” It turns out that it’s not always so easy.

Follicular lymphoma is an example of what they call an indolent cancer. An indolent person is lazy and does whatever is necessary to avoid physical or mental exertion; an indolent cancer is one that progresses comparatively slowly. I say comparatively because my follicular lymphoma is progressing: new lumps in new places, and they’re growing. But still, if you end up with cancer, an indolent one is the type to get.

Currently I still have what they call a low tumor burden, which means that the total amount of cancer in my body is still relatively low compared to what it could be. On day one my oncologist pointed out that he could treat my cancer and “knock down” those tumors with chemotherapy, but clinical experience shows that treating a low tumor burden patient does not change rates of survival. I’ve dug through some of the peer-reviewed medical literature on this, and he knows what he’s talking about: Treating me now would very likely have no effect on how long I will live. And by the way, it’s not possible to predict with any real degree of confidence how long it would take for my cancer to kill me—I could die from something completely unrelated.

This puts one in the unusual position of having to decide whether or not to get treatment even though I can feel the progression of the cancer in the lumps in my neck. In case you’re wondering, no, removing the lumps does not get rid of the cancer. It’s called lymphoma because cancer cells are constantly circulating through my lymph system, and cutting out lumps doesn’t get rid of those cells. New lumps will continue to form and grow, and very likely in my neck (as well as in other places, like the ones I already have in my abdomen). One estimate that looks reliable to me is that there are roughly 800 lymph nodes in the human body, and of those about 300 are in my neck. There are lots of places that these cells can park and divide, and it will be completely impractical to remove all of the resulting lumps, not to mention that surgical removal runs the risk of damaging some of the many nerves in the neck.

The standard treatment for follicular lymphoma involves the usual sorts of side effects from chemotherapy: nausea, vomiting, loss of hair. These things can be managed. It’s the other side effects that are more serious: immunosuppression, peripheral neuropathy, drug hypersensitivity, and heart failure. I intend to avoid chemotherapy for as long as it is reasonable to do so. I’m going to continue to do watchful waiting with my oncologist, and I don’t anticipate deciding whether to take chemotherapy until my tumor burden is somewhat higher. There’s no way of confidently predicting when that will be, either.

One could, of course, hope that some kind of new treatment will become available. We are, in fact, in the midst of what might turn out to be a golden age of discovering new treatments for many, many different kinds of diseases, including different kinds of cancers. Some of these deal with so-called blood cancers, including lymphomas. My immune system does not recognize that my cancer cells are bad guys, and no, there isn’t any scientific evidence that dietary modifications or supplements of any sort will under any circumstances fix this. One promising treatment, however, is called CART therapy, in which some of a patient’s own immune cells are removed, artificially re-engineered to recognize the cancer cells, and then injected back into the patient where they go on a spree eliminating cancer cells from the body. Some experimental trials with a few patients have been done, and the results have been positively spectacular. However, even apart from the fact that some patients have died as a result of those treatments, this therapy appears to be a long way from being ready for use in patients like me.

At the end of the day, I have to decide how I’m going to confront not only my cancer, but also other issues that I’ve been facing. Would it surprise you if I said that sometimes those things are more difficult for me? I’ve chosen to comply with God’s clear direction:

Do not be anxious about anything,

but in everything by prayer and supplication with thanksgiving

let your requests be made known to God.

And the peace of God,

which surpasses all understanding,

will guard your hearts and your minds in Christ Jesus.

(Philippians 4:6-7 ESV)

Recently I have been thanking God—with an unusually deep, intense sense of gratitude—that I have cancer instead of my wife, son, daughter, or son-in-law. Like still waters, the peace runs deep.