Questions, Questions and More Questions.
Joanie had September off from any chemotherapy treatments. So, between getting to know her new friends, Bailey and Brandy, and getting back to work with a renewed enthusiasm, she pretty much put chemo out of her mind. She was living without fear for those weeks, and it was one of those times when we welcomed the break.
As for me, my job as caregiver was to ask some questions. The results of the latest PET scan, for me, were troublesome to a certain extent. First of all, I saw it as maintaining the status quo, which to me was unacceptable. Secondly, it seemed to me that reducing the dosage by 25 percent, while it seemed to mitigate some of the side effects we saw from the first three treatments, had no effect on the cancer that I could determine. Lastly, I was curious if it would be possible to raise the dosage by some percentage that would bring it closer to what it had been before, but not the full dose she had received during the first three treatments.
These were all questions that Joanie had nothing to do with. She left this aspect of her care totally up to me. Now, I am not a medically trained professional, as I have acknowledged before, and I am not schooled in the arcane and often confusing methods of treating someone with advanced, metastatic cervical cancer. However, I had learned enough over the last ten years to ask questions I thought needed to be asked to help me and Joanie understand what was going on. A good deal of the time, these were questions that occurred to us after we had left the Dr. Carson’s office, or Dr. Thomas’ office. More precisely, there were often questions that occurred to me.
When they did, I would address them in a letter to Dr. Carson, and after Joanie’s August appointment, I wrote this letter, and sent a copy of it to Dr. Thomas, since he was the one in charge of her chemotherapy treatment.
“September 19, 2006
“Dear Dr. Carson:
“Joanie and I have a couple of questions regarding her pending resumption of chemotherapy on the 3rd of October.
“And, just so you know, I am also sending a copy of this letter to Dr. Thomas so both of you know what our questions are regarding the treatment regimen for the next four months.
“The questions now revolve around the amount of the dosage which was reduced after the first three treatments in March, April and May did not go so well.
“As we understand it, the PET scan from 5/30/06 said this: “Since 2/14/2006, there has been a decrease in number of abnormal regions of FDG uptake in the chest and liver regions, however, significant regions of uptake still remain on today’s scan. These findings correlate with some response to chemotherapy, although residual neoplasm is still present at multiple locations.”
“That scan was done after the first three treatments which were at full dosage.
“Now then, with the final three treatments, the dosage was reduced by 25 percent, and the results of the PET scan of 8/232/2006 reported this, “Findings: the study is compared to a previous examination dated 5-30-06 and demonstrates no significant change in the number of focal regions of increased glucose metabolism in the chest and liver regions. No definite new lesions are apparent. The intensity of the lesions appear to be relatively stable when allowing for technical changes.
“Impression: Multipe focal regions of increased glucose metabolism in the chest and liver not significantly changed dating back to 5-30-06.
“Now that tells me that while the cancer didn’t grow during those three months of decreased dosage, neither did it shrink significantly when compared to the first three months of treatment at full strength.
“We know that in 2003 that dosage worked, and that was one of the reasons it was chosen to be used when the cancer reappeared.
“If we examine the circumstances surrounding the problems associated with the treatment during the first three months of the cycle, I think we can see that some of the reasons for the problems are no longer problematical in and of themselves.
“For instance, the nausea which occurred after the first three treatments was a function of the fact that Joanie wasn’t feeling well when it started. There was also the problem of the pleural effusion that was a contributing factor, and we did get behind the nausea curve with the Kytril. All of that has been dealt with, and nausea has not been a major factor in her recovery from the treatments since.
“The other two times when she was admitted to the hospital following treatment it appears that infection was the culprit and that problem has been addressed as well, and now she has a urine culture prior to the treatment. Also, she is getting a shot for her white cells as well as a shot for her red cells after each treatment. She was also put on Cipro daily to deal with the problem of the urinary tract infection.
“Now then, the question is basically this: If we assume that despite the problems attendant during the first three months of treatment the full dosage did show, “there has been a decrease in number of abnormal regions of FDG uptake in the chest and liver regions…” and the last three months with a reduced dosage showed “…no significant change in the number of focal regions of increased glucose metabolism in the chest and liver when compared with the scan of 5/30/06,” is there any wisdom in perhaps incrementally increasing the dosage over the next four treatments say at a rate of 5 percent or something like that? Or, perhaps the October dosage could be bumped up to 85 percent rather than 75 percent or 80 percent, and then the dosage could be increased again in November, again in December, and again in January for the final treatment of this schedule.
“Obviously, I am not a medical professional, neither is Joanie however when one looks at the recent history of her chemo treatments from 2003 it appears to us as lay persons this way, put quite simply: In 2003 the full dosage worked without any serious attendant problems.
“In 2006 the first three worked albeit with some attendant problems which have now been dealt with.
“The final three did not appear to work, except that no new lesions were detected.
“All of this begs the question, can we expect the reduced dosage that had little impact on the cancer over the past three months to have a significant impact on the cancer over the next four months?
“Now then, maybe I’m all wet and haven’t a clue about what is going on here, and if so you can certainly feel free to disabuse me of any of the notions presented here. I won’t be offended. The only thing I’m trying to do is make sure that we are doing everything we possibly can to eradicate the cancer that has taken up residence in her body before it evolves into something we can’t control.
“Dr. Carson, you have known me well enough over the past 10 plus years that Joanie has been battling this thing that it is part of my job to pose the questions that we can’t, or don’t, often articulate until some time after we have left your office and had a chance to reflect and digest information. This is one of those times.
“Thank you for your consideration, and I know hour are busy, but I would appreciate hearing from you, or you can visit with Dr. Thomas and get his valuable input since he sees a lot of Joanie, and can relay your thoughts on this issue.
“Take care, and I look forward to hearing from you.
I never showed the letter to Joanie before I mailed it. She trusted me to keep her informed on anything I thought she should know, or to clear up any confusion she might have about what was going on with her treatment.
In retrospect, I wrote it because I was worried, and wanted to be sure that the treatment was being as aggressive as it could safely be. Joanie’s welfare was my concern, plus, I wanted to be satisfied that I understood what was going on myself. The way I looked at my job was to have the information I needed to help her get through this difficult time in her life.