Samples can save you money.
Joanie was busy from the time we got back from Minneapolis, and seemed so focused on her work and play she hardly thought about the upcoming first round of chemotherapy. She had to have a CT scan done that we could take down to Dr. Carson, and outside of that, we were ready.
The first order of the day when we got to Minneapolis was to check her in to have a Port-A-Cath put in. This was a surgical procedure that placed an access device under the skin which was connected to a catheter that was inserted in a major vein. This device is often used when the patient has to receive numerous infusions of chemo. It was outpatient surgery, and the recovery time was minimal, and she didn’t have any side effects of note.
On Wednesday, July 16th, we went to the clinic to meet with Carson prior to the first round of chemo. The mood that morning was subdued, but Joanie was resigned now to getting this underway and getting it done.
Carson pronounced her fit for her first round, and gave her some hints on how to deal with any of the expected side effect, such as nausea and fatigue. She told her that the anti-nausea drugs she would take after each infusion should handle that aspect, and as far as fatigue was concerned, she just suggested getting rest, and said it wouldn’t last long.
With that we went next door to the Masonic Cancer Center to check her in and wait for them to call her into the infusion center. Joanie sat silently as we waited for her name to be called, fidgeting with her Kleenex, and when the did call her name, she looked at me and said, “Here we go.”
The infusion center was a pleasant enough place, with reclining chairs for each patient, and if privacy was wanted, they could pull a curtain around the patient’s chair. There was TV available for each patient, and as there seems to be in every hospital setting out of date magazines if one wanted to read.
The nurse who escorted us in, got Joanie settled, and went over what was going to happen over the next six hours. They first thing they would do would be to access her port to be sure they had an open line. Then they would begin to give her an anti-nausea drug, and another drug to minimize drug toxicity. They were after all going to be putting poison though her veins. She would also receive called Mesna to protect her kidneys and bladder from the effects of the chemo drugs.
The other three drugs would follow, each with their own prescribed time table for infusion, bringing the whole session to right around six hours. We would find that this regimen was one of the longer ones, and over the months, Joanie would often be the last one there.
The hooked her up and began the process, and things seemed to be going well untill they were done with the first drug, when she threw up. It alarmed me, but the nurses there didn’t seem concerned. They were prepared for such an incident with necessary bowls at the ready. After she rested for a few minutes, she seemed fine, and didn’t have problem for the rest of the infusion time.
The rest of the infusion went by without incident, and Joanie seemed to tolerate it just fine. She was bored, but that was about all. Then, I was told we needed to have some Kytril, which is an anti-nausea drug, and so I went to the pharmacy right next to the infusion center, and asked for the necessary dosage. She would need to take the drug twice a day for three days, early in the morning and later in the evening. The pharmacist brought me the prescription and told me that would be $180.00. I was stunned. I couldn’t believe it. I wrote the check, but the more I thought about it, the madder I got.
I’m thinking, she’s really given herself over as a guinea pig in this study that may or may not help her, and now we have to pay for the anti-nausea drugs to combat the poison they are using for this clinical trial.
I couldn’t hold myself back any longer, and told Joanie I was going out for a smoke. When I got outside, I called the nurse who was the administrator of the trial, and expressed my unhappiness. She told me that was part of the protocol for this trial, and that was it. I got more angry, and said, “Wait a minute, Bristol-Meyers Squibb is sponsoring this clinical trial, and if it is successful, they will put out press releases across the land touting the efficacy of their drugs, and will make a fortune, meanwhile, the subjects have to bear the burden of dealing with the side effects of those drugs.” I also told her that since the University was the investigator of the trial, it would also have some positive press coming out of it, assuming the trial is a success.
She listened to my rant, and then asked me if I wanted to take Joanie out of the trial, and I really almost lost it. I said, “Of course not, don’t be ridiculous.” I hung up after that exchange, and that was the last time I had any communication with her for the duration of the trial. I waited outside for a while, and smoked another cigarette before I went back into the infusion center. I never told Joanie about what had happened.
I’m sure part of my frustration that day dealt with my own feelings about what was going on with Joanie, but at the same time, I thought that we shouldn’t have to bear any cost for being involved in research that may or may not help her, or anyone else. It wasn’t that they needed to pay her for being involved, but considering she was taking a risk in being part of the research, there should be no cost on our part.
What I learned from that first day was to ask for samples. When we got back to Bismarck, we talked to a friend of ours who was in the pharmacy racket, and he told us they always have samples, all you have to do is ask for them.
The next time, I did, and got them. I was told to have Dr. Carson’s nurse make the request the next time. The next time, when it came time to leave, I went to the pharmacist, and asked for samples, and she asked me if Carson’s nurse had ordered them, and I sheepishly told her I forgot to ask. She looked at me and told me to be sure and have that done the next time.
Lesson: Always ask for samples.
Joanie had made it through the first session of chemo, and had done so in fine shape. As we left the infusion center to go back to Ginny and Ed’s, she just said to me, “Only five more to go.”