Changing the dosage, and changing the plan.
Joanie’s eight week layoff from chemotherapy comes to an end on October 3rd. It had been a good time for her. She was feeling good, even her hair had been making a valiant effort to return to its former glory. It still had a way to go, but had come back far enough for her to go without a wig when she felt like it. Actually, her health was so good right then, it was hard to remember that the cancer that was dogging her was still there and remained to be dealt with.
The hiatus was like other times over the last ten years, when she went about life without regard to her physical situation. She never wore her disease on her sleeve, and refused to let it dictate her activity any more than it did. People who would meet her would never know what she had been through, or was currently dealing with. Emptying the Miami Pouch and the colostomy had become such a second nature to her it seemed like they had always been there. She had reached a state where she could even joke about them with friends.
That cancer can do this to people is one of the insidious things about this disease. They can go about their life despite having been through a really tough period, and for a while they live with the illusion that things are okay, because they can’t feel this good if something is going terribly wrong. It is not only one of the insidious things about cancer it is also one cruelest because of the emotional toll. It is cruel because in the quiet of the night, alone with one’s thoughts, the harsh reality remains, and it will not be ignored.
On Tuesday, the 3rd, we were to meet with Dr. Thomas at Mid-Dakota Clinic and find out what he and Dr. Carson had decided regarding any changes to the chemotherapy. I had written to Carson and copied Thomas with my questions about whether or not they might boost it back up a bit. Joanie and I talked about that the night before, and she understood what my concerns were, and by this time, I had shown her the letter I had sent to both of her doctors. She never objected to me corresponding with her doctors. When I first started doing that, I wondered if she wouldn’t consider it meddling, but I came to learn that she relied on me to ask the questions, she wouldn’t or couldn’t. I realized that every patient needs to have someone who can do that for her, or him.
Dr. Carson had told us when we met with her she was going to order four more treatments, and then after four months, they would do another PET scan to see where things are. When we got to Dr. Thomas’ office, we would find that plans had changed again. Thomas had talked with Dr. Carson, and now, he told us, the plan was to do two treatments, only with an increase in the dosage above what it had been for the last three. Then they would do a PET scan in November to check on progress. That was what I had asked Carson about.
Dr. Thomas was of the opinion that the current regimen wasn’t working, only maintaining the status quo, something I had thought about as well. He did agree, however to go along with the idea of boosting the dosage that had been reduced for the last three times of the first cycle. He told us that the dosage, which had been decreased by 25 percent for the last three would only be decreased by 12 1/2 percent for these two treatments.
I sat there hoping that we might see some progress from this step, but of course, we would have to wait. Joanie sat there, just nodding her head, and not saying much. She wanted so much for this to work, even if it meant chancing some adverse side effects from any increase in the dosage. She had agreed with me, when we talked the night before, about the need for an aggressive approach right now, and was willing to take the risk.
Dr. Thomas said one more thing that morning that stopped me cold. He told us that if, as he suspects, there is no progress, then we can look at alternative treatment. He told us about a new drug that had just been approved for use against cervical cancer, and it would be used with Cisplatin, another common chemo drug.
When he said that to us, all I could think, to myself, was, “Oh crap.” A moment before I had felt pretty good about the fact they were going to increase the dosage, but that hope went out into the ether when I heard those words from Dr. Thomas. I knew, he was the doctor, one with years of experience in such situations, and one who was trying to save Joanie’s life. I knew that. I knew that, but it was hard hearing what he said. I reminded myself that this man knew more about this disease than I could even imagine, and besides, we trusted him implicitly. I also reminded myself how totally ignorant I was about the subtleties, nuances and realities that surround such a complex situation. I properly humbled myself, to myself.
I looked at Joanie for a reaction from her when Dr. Thomas told us what he thought, and it was obvious to me she wasn’t thinking about it in the same way I was. All she knew was that she was going to leave his office in few minutes for another night in the hospital with a seven or eight hour infusion of the drugs that had made her so sick earlier this year.
We checked her in to her room at St. Alexius, and they began the process of hydrating her prior to introducing the drugs, and she got comfortable. The infusion went well, and I would come and go until early evening, when she was sleeping, and then I returned in the morning to pick her up, and she told me she had a good night, and was feeling pretty good. We had our supply of Kytril, the main anti-nausea drug, that we had gotten from Kathy, Dr. Thomas’ nurse, and I took her home.
She took up her place on the couch, and her two new friends, Bailey and Brandy were there immediately to vie for places on her lap. She told me she wanted a glass of orange juice, which I fetched for her, and when she was done with that, she asked me for a cherry popsicle.
I began to think she wasn’t going to have any problems following this first treatment, and she didn’t.