Out of options.
We got to the clinic on September 5th at 7:30 in the morning. They wanted to do lab work, and there was a CT scan scheduled for 8:00. Scans never take long, and since we had until 10:00 when Joanie was scheduled to meet with Dr. Thomas before beginning the 5th cycle of this current chemotherapy treatment, we went for coffee. There was little sense in sitting in the waiting room til then.
Joanie was on edge, as she was often when we were waiting for results of something as important as a scan. There is never any way to guess what it will show, and that raises the level of anxiety.
We went to Perkins and ordered coffee, juice and nothing else. Joanie wanted some toast, but she knew that there was a good chance she would throw up as she takes the treatment, as she almost always did, so she chose to just have the coffee and juice. We could always eat afterwards.
She did make a couple of calls, and sounded for all the world like there was nothing bothering her when she was talking, but when the calls were ended it was a different story. I could see she was nervous, and I cautioned her, as I had before, to not be construction worst case scenarios before we knew what we were dealing with, and we would know that very soon. She told me she knew she was mind-fucking, but it was still hard to not do it. All I could do was tell her it was okay, especially since she knew she was doing it.
The time had come to meet with Thomas, and the news wasn’t that good. It wasn’t all bad, but it just wasn’t that good. He showed us the scan on the computer, and told us what it was showing. Thomas told us that the scan, when compared to the August 25th scan showed “the mass invading the spine has increased slightly by about 28 percent.” Also the mass in the right chest wall had increased. The multiple rib lesions had also increased in size. There was some good news in that there were no new lesions found. So, that’s what Joanie grabbed a hold of.
Dr. Thomas told us he wanted to do two more cycles, and then do another assessment. I think he was concerned that this regimen wasn’t working either. He said he was also going to talk with Dr. Carson to see if there were possibly any clinical studies that might be available.
Joanie and I went back out into the waiting room until they called her in for this infusion. She seemed more relaxed, but I knew the news about the increases were troubling her. She chose not to talk about it with me, which was not unusual, and as usual, I didn’t press. She would talk when she wanted to.
The infusion went as other had before them. It would start, Joanie would throw up, she would feel better and it would continue. We would leave and I would take her home. She had been up early this morning, and with the news we got, it had already been a hard day. She didn’t go into the office that afternoon, choosing to hit the couch with Bailey on her lap and try to rest.
As would often happen following an infusion, her appetite went south. She would drink juice, Boost, or one of the sodas we might have in the refrigerator, but outside of a cherry popsicle, and maybe some chicken noodle soup, she ate nothing for the first couple of days.
Nausea following chemo was always a threat, and I think that contributed to her food intake. Memories of earlier episodes were never far from her mind, even though the Gemzar had not been as tough on her as some of the other chemo drugs she had been given over the last almost two years. I would always get some samples of Kytril from Kathy before we went home, and that anti-nausea drug really helped.
The one thing that was troubling now was her energy level. She would tire easily, and that meant she was only going into the office for a few hours in the afternoon.
Our meeting with Thomas on the 11th, for the second round of this 5th cycle was much the same as the one a week before. He did take note of her fatigue, and the shortness of breath issue, which was attributed to a mile right side pleural effusion. The pleural effusion would be dealt with later with a thorcentisis to drain the fluid off her right lung.
The infusion went well, and then Joanie would have some time off before her next meeting with Dr. Thomas on the 25th. I think this gave her some much needed relief at this point. Both of us were still acutely aware of the news we had received earlier, and this break gave her a chance to recover, and get ready for the next cycle.
“How much time are we talking about?”
Her next meeting with Dr. Thomas was an afternoon appointment on a Tuesday. She was to have some lab work done and a chest x-ray done at 2:00 and we would meet with Dr. Thomas after that.
We got called into the office, and then Dr. Thomas took us out to look at the pictures from the chest x-ray they had just done. He told us, pointing out areas that looked like nothing to us, but to him showed that the disease had progressed. Now, I was getting a bad feeling.
We went back into his office, and talked about the progression of the disease, and he told us there would be no chemotherapy today. He said, the chemo is not helping her, and he had talked with Dr. Carson about any possible clinical trials, but they would very difficult, and they weren’t sure she would qualify.
His next words fell on our ears like a thunderous boom, even though, he delivered them quietly and matter of factly, aware of their importance, when he said, “We have run out of treatment options.”
He said she had received most of the treatment that is available. My only thought was, “Holy shit, he is telling us Joanie is going to die!”
I felt like the air had been sucked out of the room, and looked at Joanie for her reaction. Thomas was holding her hand, and she looked at him and asked, quietly and matter of factly, “How much time are we talking about?”
I had never expected that question from her, and it stunned me into silence. I just sat quietly, not knowing what to say. This was the worst news we could have ever heard, and it was the fear she had lived with for so long, coming true.
Thomas looked at her and said, “Joanie, I can’t say, I don’t know. I have never seen anyone who has what you have, survive as long as you have already, so I just can’t say.”
She just sat there, twisting her Kleenex to shreds, but no tears were coming. I reached for her hand, and squeezed it, but she still wouldn’t look at me. I looked at her, and she seemed so much smaller, and all I could think of that I was helpless to do anything, and I wanted to scream.
He talked to us about “supportive care” without any further treatment, and said he was going to order a thoracentisis for tomorrow to see if they could get a handle on the shortness of breath issue, and would give me a prescription so she could have oxygen at home.
He did talk briefly about home health care, or hospice, but Joanie wasn’t having any of it right then. When she heard the word hospice, I could see her jaws tighten, but she said nothing. Wisely, Dr. Thomas didn’t pursue it, for all if would have done then would be to magnify the already bad news, and that was going to be a lot for Joanie to process. It was already a lot for me to process.
Dr. Thomas left the room, and Joanie and I sat there for a couple of minutes, neither of us saying anything. Her eyes began to mist over, as we looked at each other, and as she dried them, and blew her nose lightly, she signaled it was time to leave.
We walked out of the clinic, both wondering what we were walking toward.
That night, at home, just Joanie, me, Bailey and Brandy, it was a quiet night. Joanie hadn’t been having much wine, since the pain killer she was taking didn’t mix well with Chardonnay, but tonight she didn’t seem to care.
We did what we had done on troubled times before, opened a bottle of wine, got some bread, some olive oil for dipping, put on some of our favorite music, and sat close to each other.
Neither of us said a word about what had gone on this afternoon. There would be time enough for that tomorrow.