Chapter 14

February, 2007

On February 25, Don developed extreme shortness of breath, so much so that he couldn't take three steps without gasping. He'd been tired and easily worn out as a result of the cancer's depradations, but this was clearly something new, and not at all a positive development.

The next day I took him to the doctor. The doctor speculated the problem might be more fluid on the lungs, or low hemoglobin, and they ran the usual battery of tests, including an x-ray.

When we got home, Don announced his intention of going back to work on the computer. He slowly went up the stairs on his hands and knees, but the effort exhausted him so much that he lay on the floor of our bedroom, gasping for breath, for a good fifteen minutes before he was able to make it to the computer.

Later that afternoon, they called us and told us that they thought Don might have developed interstitial lung disease, an extremely rare side effect of Tarceva that affected less than one percent of patients. I did a fast Google search, and discovered that interstitial lung disease had to do with inflammation and scarring of the air sacs. The websites all referred to it as "potentially fatal."

We crossed our fingers and hoped the doctor was wrong. In the meantime, they discontinued the Tarceva, just in case.

On the 27th, he had a CT scan. The good news, reported to us that afternoon, was that it wasn't interstitial lung disease. The bad news was that it was blood clots (called a pulmonary embolism) in his right lung. This seemed odd to me, because his tumor was in his left lung. We also received the depressing news that the Tarceva wasn't working-- his major tumor had expanded a full centimeter, cancer was growing in his right lung, and he now had a pleural effusion on that side, too.

As a result of all this, the doctor felt that the Tarceva wasn't going to work for Don, and that chemo was now our best option. But before we could get Don onto chemo, we had to get rid of his blood clots and get him in better physical condition. Right now he was in no shape to withstand the rigors of chemo.

A medical company came that afternoon to set up an oxygen machine for him, at the doctor's orders. Once it was set up, it crouched in the corner, humming. A long stretch of tubing allowed Don to move from the office to the bathroom to the bed, and the pure oxygen flowing into his nose via nasal cannulae made him more comfortable. We were also given canisters of oxygen that we could take if we had to go to the doctor's office. Meanwhile, the doctor wrote a prescription for anticoagulants, which would hopefully take care of the blood clots.

The doctor kindly made a house call that evening to administer the first shot of anticoagulant. Although he was no doubt a wonderful oncologist, he wasn't very good at giving shots, because poor Don (who'd always had a bit of a needle phobia) had to bare his teeth to keep from yelling when the needle went in. He thanked the doctor politely, but afterward, he told me, "I can't go through that twice a day every day. It hurt like hell."

A home care nurse came the next day to show me how to administer the shots. I was terrified at the prospect of hurting Don that badly, but once she showed me how to do it correctly (by bunching the skin between two fingers and inserting the needle directly into the bunched fat), I tried it, and we were relieved to discover it didn't hurt him much at all.

Our pastor came by the next day, and he and Don talked for a long time, with Don stretched out on the bed and the pastor sitting in the chair next to it. He'd been visiting pretty regularly, and we appreciated the support. Don loved to talk about philosophy and religion, and the two of them engaged in a long, earnest discussion about why God might allow people to suffer and die, and what purpose it might serve in the grand scheme of things.

I didn't join in the discussion much, because I was busy chasing the toddler around. Moms don't often get to indulge in philosophy.

On March 2, I took Don to the doctor. We were late for our appointment, because he insisted on working till the last possible moment, and then it took him much longer to make his way down the stairs than either of us expected. Even with the oxygen cannula in his nose, and the tubing connected to a canister, he found it extremely difficult to move any distance. Making his way down the stairs, and then across the kitchen and through the garage, required several long interruptions, while he sat on the floor and gasped.

Once we finally got to the doctor's office, the oncologist listened to Don's breathing and told us he thought the blood clots hadn't broken up yet, but that he hoped they would shortly. Don was relieved by that, because he didn't want to spend the remainder of his life on oxygen. He'd lost three more pounds, because it wasn't easy to eat when he couldn't breathe properly. He couldn't focus properly, either. The inability to breathe properly was making him miserable and exhausted.

The next day would be Don's fortieth birthday, and his whole family was coming to see us. I bought a cake (although considering the oxygen machine, I figured we'd better skip the candles).

At least, I thought, he'd made it to forty. And if we could just get the blood clots to break up, and get him onto chemo, maybe, just maybe, he could see another birthday or two.

Read Chapter 15 here.