Worry, Scan, Treat, Repeat: The Cadence Of Living With Cancer

“Dammit, why do you do this?” my wife, Kris, grumbles to the spirits inside her phone. She’s on our pharmacy’s website, trying to renew some of my many prescriptions as we drive to the Massachusetts General Hospital Cancer Center in Boston. Moments later, I hear a louder, despondent “Noooooo!”

Kris isn't mad at the software, the phone or the pharmacy; she's angry that cancer -- for five years now -- has turned our world upside down. The days leading to these regular cancer center visits are more than a little stressful. The smallest annoyances tip the scale of normalcy, bringing all worries to the surface.

I have lung cancer. It is one of the deadliest of cancers, with a five-year survival rate of 17.7 percent, according to the American Lung Association.

My latest treatment plan has me visiting Boston every three weeks, alternating between one- and two-day visits. Many of the visits are broken down into three stages: do the scans and blood work to assess the disease progression; consult with my doctor; and receive treatment. It's a stressful and tiring cycle that many cancer patients may recognize. Here’s how one of my trips to the cancer center unfolds...

Checking In

When Kris and I arrive at the hospital and enter the busy clinic, I express sadness at the lack of snow on the ground to David, a patient service coordinator and the first person I see each visit. He tolerates my attempt at humor by smiling, because, after my many visits, we are friends. Only a few weeks ago, his reaction to seeing me had been very different. He had shown visible concern and asked how I was doing. At that time, I had been taking quite a bit of pain medication and it was clear I wasn’t feeling well.

As a patient, I appreciate the many small actions by the hospital staff aimed at making my visit as pleasant as possible. A smile, an offer to find an extra pillow, or bringing a snack early; these little things can make the biggest difference in a visit. But I often wonder how the staff feel when patient after patient — people like me, in whom they’ve invested so much of their time and heart — succumb to the disease. It can’t be easy to maintain a positive attitude, month after month after month.

Oh, So Many Scans

On the first day of my two-day visit, I get a series of CT scans and an MRI. In the past, the scans have identified: a new brain infarct (twice), causing me to take more medicines; a fractured bone caused by a previously unseen metastasis, triggering radiation; a handful of brain tumors that appeared spontaneously, prompting stereotactic radiation surgery (SRS) (twice); and disease progression causing abandonment of one trial drug for another (also twice). Not to mention that time the scans picked up two healing ribs that I had cracked in an ice skating fall.

I normally have a quick five-minute set of CT scans for my chest and pelvis, followed by a much longer brain MRI. During the CT scan, I think about the many dozens of X-rays I’ve been subjected to, and wonder if they might possibly be a concern. The MRI is very different. It’s all about being squeezed into a cramped space, my head held in place by a cage-like device, my arms brushing the tunnel sides, and being accosted by a variety of clicking and banging noises. Whereas with every other treatment I've received I want to be alert and participate to the fullest, inside the MRI I try my very best to zone out completely.

Worrying

On the second day, we return to the clinic for my evaluation. After my blood is drawn, I’m brought into an examination room, where a nurse takes my vitals.

She leaves, and Kris and I are alone in the exam room. We sit, afraid to break the silence, waiting for our doctor to arrive. Will this be just another visit? Or will our lives once again be turned upside down by a worsening condition?

Disease progression is often subtle, and therefore difficult to measure. We know the drugs are only slowing the disease, so the question is, is the disease getting ahead of the drug? And if so, is there a change we can make to address this progression?

Each decision is a trade-off. How long can a drug be stretched, knowing that each only works for a while before it ceases to be effective altogether? Do I keep taking a drug because it controls some aspect of the disease, like brain tumors, even though it no longer provides benefits to the lungs? If I run through the complete set of new genetic drugs, and do this quickly, will research into new drugs keep up with my disease?

Evaluation

Finally, my doctor walks into the exam room. As always, hugs are exchanged before any discussion starts. She always delivers the good news first, followed by any potential concern or negative results. Today, there is only good news. The chemotherapy is starting to deliver the hoped-for benefits. The disease progression, for now, has been somewhat reversed.

But lung cancer all too often migrates to the brain. A cancer-caused neurocognitive deficit is one of my biggest fears because it threatens my ability to think, to hear, to see, to feel... it threatens my very being. I've had several close brushes already: two asymptomatic brain infarcts, more than a dozen small brain metastases removed by two SRS procedures, plus many more small brain metastases being held in check by a targeted drug, a drug that is no longer effective in my lungs.

My doctor knows my fears, though we've never spoken directly about the likely effects of the brain metastasis progressing. Do we avoid it because I don’t want to know, or because she doesn’t want me to know? How will she steel herself when she has to deliver bad news? I know that will be as hard for her as it is for me.

Chemotherapy

The final stop today is for my chemotherapy treatment. I sit in a comfortable chair in a room that overlooks the Charles River. Looking down at the water, I feel myself relaxing as my mind drifts to the good times I've spent with friends in boats practicing and competing here, and not so long ago in the Masters Nationals.

Until recently, I only took targeted drugs (I call them “magic pills”) in my battle with cancer. Except for the cataracts and extremely high, diabetic-like sugar levels, the side effects of the drugs were annoying, but quite manageable. Chemo is different. It’s a toxin that, at the right level, mostly kills the cancer. If taken on a prolonged basis, chemo has the potential to cause more harm than good. Fortunately, the side effects of my first round of chemo, so far, have been minor — mostly fatigue.

Spreading The News

After chemo, we leave the hospital and get onto on the highway. Kris is back on her phone again. Her first action is to draft a report to the core family members and friends, sharing the news.

To All,

Happy to tell you Dave's first scans since starting chemo six weeks ago look good! Real improvement. So relieved!

XOXO

Kris always initiates the updates to family and friends after each visit. I’m reluctant to send them, because I don’t feel my problems should overshadow other people’s lives. But the updates do go out, month after month.

We had serious talks about who should get the full story and who the brief, feel-good summary. Not everyone is told both the good and not-too-good news. We do this to avoid alarming family and friends and then spending a good deal of time trying to convince the same people that things aren't really so bad.

On the whole, sharing the news has proven to be the right decision. Cancer affects more than the individual, so knowing the full story helps everyone accept what is going on. For me, receiving support and understanding from friends and family continues to be a source of strength and hope.

Breathe Easy, For Now

The stress we felt on the way to the hospital is greatly reduced now, but it is never entirely gone. I accept that my fight with cancer is a war I can't win, so I celebrate the small victories. I feel that I’ve again dodged a bullet, and I double down on life by putting my energy into those things that are important — until the next visit.

David Kimball is a retired software entrepreneur who lives with his wife near the University of Connecticut, where she teaches. He spends his time with his growing family and his hobbies, which include cabinetry, rowing, hiking and writing.