After cancer treatment, missing the war

During the course of my cancer treatment, which from diagnosis to last day of radiation lasted about ten months, I didn’t connect with the war metaphors that constantly surround the discussion of cancer. That language often annoyed me, actually, because most of the time I felt I was doing nothing that resembled fighting a battle. How could I be waging war – something that surely requires vigorous action – when it was often all I could do to get out of bed and pad around my house for an hour or so before I fell asleep again wherever I happened to sit down?

Looking back, now, I see it differently. I see how every action I took over the course of my treatment was a charge, a strike, a battle offensive against the disease. And I’m missing the war.

A couple of days ago I received a call from my oncologist’s assistant. She let me know, with great kindness and clear frustration, that my insurance declined to pay for the MRI that I receive annually. This insurance plan only covers an MRI in the case of a current abnormal mammogram and ultrasound (apparently, in part because I tested negative for the BRCA1/BRCA2 mutations, it is not concerning enough that I’ve already had cancer). This is the MRI that has been prescribed for me since my treatment concluded, the MRI my doctor wants me to have, the MRI that provides sensitive imaging of the entire area where my tumors were located – an area not covered by my annual mammogram, since I no longer have a mammogram on the reconstructed breast, just the other one that contained no cancer and was not removed.

We used to have different (and better) insurance. Because both my husband and I are self-employed, and neither of us has had work in recent years that earns us outside insurance, we pay for our own coverage and must use a plan on the Health Care Exchange. Although I support Obamacare and know that it has generated many important developments, especially in providing care for the uninsured, we are a textbook example of what needs improvement with the law: We cannot afford the most comprehensive health care plans on the exchange (many of which far exceed $2000 per month), but our income is not low enough to qualify for subsidized plans. We are stuck in the middle, where we pay an exorbitant monthly fee for an insurance plan that – no lie – covers only 40% of hospitalization and doesn’t pay for routine care outside of our home state. And those are only two of the many insidious features of our plan. We encounter more and more of these sneaky little barbs over time as we take everyday actions to maintain our health and our children’s health.

But I digress.

I am pondering what to do about this MRI. I could petition the insurance company, and my oncologist’s assistant told me she would help me wade through the requirements and see if there is any way to compel the company to cover it. I could pay for the MRI out of pocket, but at over $1000, this option is not really an option. However, I don’t want to give up that test, because it is one of the few offensives I have left.

See, after I had surgery and reconstruction, and the surgical recovery and PT appointments ended, and the chemo infusions were done, and the course of radiation was complete, and the appointments with five different doctors dwindled, and the mountain of prescriptions went down to one for Tamoxifen, and the frequent and various scans became a once-a-year combination of mammogram and MRI – after all these actions died down, I realized how much my emotional stability relied on them. They were my battle strikes against this furtive and confusing enemy. The doctors and nurses were my commanding officers, and I received their directives with determination, relieved to feel supported by knowledgeable superiors guiding me through the battlefield, and heartened to feel that I was actively, tangibly fighting.

The end of that active, tangible fight is what unnerves so many people after their cancer treatment ceases. When you aren’t throwing punches every day, you worry that your inaction makes you vulnerable. Before I was diagnosed I was going about my business, oblivious to the necessity for a fight, and I was knocked down unawares. Is another ambush around the corner? I often feel wary, skittish. Random pains make me nervous. Swollen lymph nodes can throw me into a panic. I breathe, I take calming and balancing herbs, I practice yoga, I walk, I run, I eat healthfully (with the exception of the Halloween candy festival over the last few days), I speak with a therapist, I sit outside and look at leaves. I do everything I can, and it helps. But I cannot be sure if it is enough.

At the cancer center at St. Barnabas, two experienced and caring social workers provide psychological services to patients. Pretty much every time I walked into the waiting room before an appointment or infusion, I would see the calendar or a flyer listing all of the various programs and opportunities they had available. However, I didn’t take advantage of them at any point during my cancer treatment. I kept wondering why I couldn’t find time to seek them out, and I had to conclude that I didn’t feel I needed that sort of help, which confused me, because I thought I should. Turns out I was right about the need, but wrong about the timing. About a week after my final dose of radiation, I became a ball of anxiety and nerves. I had my first appointment with the social worker shortly after treatment ended and have been back many times since.

I am missing the war. Or maybe I’m missing one type of war. It occurs to me that the war has changed and I need to adjust, much as military personnel have had to adjust over time from the structured and rule-bound WWI style of battle to the unpredictable, undefined war zones of the modern-day Middle East. The theater of battle, rather than just being in my physical body, has expanded to include my mind, and the actions have shifted away from concrete things like drugs and medical procedures toward less defined initiatives like nutrition and mental health support. I found the body-only battle easier to fight, to be honest, but I’m committed to the new battle now.