Damn it! Joanie needs a break!
Disappointments make hope more difficult, but they also make it stronger for the soul who chooses to believe.
Joanie handled the first of what was to be two more cycles of the Ifex, Taxol and Carboplatin and a slightly increased dose with very few problems. Nausea was slight, and though she was tired, that was nothing new, or unexpected. She had the chemo on the 3rd of October, and was to have the second round on the 31st. In between, she had been going back to the office, mostly afternoons, but the two weeks prior to the scheduled chemo she was doing a lot more than that. It was a relief for me to see her doing so well.
We were both nervous the day we were scheduled to meet with Dr. Thomas. Our hope that was the meeting would be routine, and she would go to St. A’s and get the second infusion. Not to be.
Joanie had a chest x-ray prior to the appointment, and things came to a halt. When we met with Thomas, he pointed out that the x-ray showed there may have been slight increase in the area of concern surrounding the ribs on her right side. At this point, I don’t think Joanie even knew, or understood that her ribs were involved then, all she knew was that there was something going wrong in her chest wall, and ribs may be involved. She didn’t understand how serious this was beginning to look.
Thomas told us he wanted her to have a CT scan to get a more definitive look at what was going on before they would go on with the treatment.
We did the CT scan that afternoon, and the results were disappointing. The report showed that since an earlier CT this year, “The destructive changes with underlying soft tissue masses appears to be slightly more prominent when compared to a prior study.” It also said the left lung nodule that had been there for years, not moving much, was now slightly increased in size. Dr. Thomas would point out to us later that there was evidence of at least a 25 percent increase in the mass lesion in the chest, low ribcage and chest wall.
The upshot of all of this, was it confirmed Dr. Thomas’ belief that the regimen was not working, and now they were going to go looking at different option.
What had started out as a good day had all of a sudden turned to a not so good day. I think Joanie was disappointed, but not fully understanding what was going on. Her focus now was on what the next treatment would be. I knew, because of the research I had done, this was more than a disappointment. It painted a darker picture looking ahead than we had imagined. As with times before, the clouds of uncertainty were once again on the horizon, along with the fear that accompanies them.
We met with Thomas after the CT scan, and he also wanted Joanie to see a urologist and get a CT scan of her pelvis and abdomen to see if they could find a reason why her creatinine level continued to remain elevated like it had since way last summer. That number is an important indication of kidney function, and if it remains to high, there are some things they won’t do. For instance, her CT scans were being done without contrast, because it can be hard on the kidneys, and until they fully understood what was going on they wouldn’t use it for the scans. At least that is how this lay person understood it.
When we left the clinic that day, Joanie looked at me, and said, “I want a drink.” I said, “You got it,” and we went to Peacock Alley. She really only wanted a glass of wine, and that was all she had, but think she just wanted to decompress a bit before we went home.
It did give us a chance to talk about what had happened today, and she asked me what I thought. I just told her, despite this setback, I was confident that between Dr. Carson and Dr. Thomas they would come up with another option that would work. I tried to be as confident as I could, because I knew she in her heart how much she wanted that to be so.
Her hope, in some ways defied the reality of what we were dealing with, but it was my job to reinforce that hope in a positive way.
In the dynamic of the caregiver and the patient, her hope becomes my hope, just as her disappointments are my disappointments, and when I see how strongly she clings to that hope, I can do nothing but hang on with her.
As I sat there with her in the Peacock bar, and the five o’clock crowd began to filter in, we got ready to go, and all I could think of right then that this woman really needs a break, and maybe tomorrow she might get one.