I'm upset because my graph is ruined. You know, the one with X's and dashes to signify Malorie's progress through radiation? Yeah, that one - ruined. OK, fine, I didn't even remember to put it at the end of the last post. But I'm upset nonetheless.
Yesterday, a nurse attendant called Rachel to discuss the upcoming end of Mal's radiation treatment. She told Rachel that one of the other nurses had heard us talking in the recovery room about how Mal's treatment ended on February 21st, and so she was calling to correct us. According to her, Mal would be done February 16th. Rachel told her she was wrong, and went to get the treatment plan that Dr. Mansur gave us on the day of Mal's simulation. On it, in black and white, it shows the 33 treatments, three of which occur after the 16th. The nurse told Rachel that the treatment plan had changed, and insisted that Mal would be done this coming Thursday. The lady said that sometimes the doctors add a few "fluff" days to the plan. Rachel told her "Bologna" or other slightly less nice words that that effect, and then told the poor nurse attendant to go get a doctor and call us back.
It's not that we are patently against Mal's treatment only consisting of 30 treatments. In fact, the fewer treatments she gets, the less chances of long term complications from the radiation - and those can be pretty nasty. But the problem is that we were sold on being aggressive by Dr. Mansur when he was developing her treatment plan. He told Rachel and me that because Mal's cancer was a grade three, he was going to take off the kids gloves and go after it; 33 treatments, the max allowed. We gave him a paper with our signature for consent to his plan; he gave us a paper with a schedule for her thirty-three appointments.
But then something changed. Dr. Mansur created Malorie's treatment schedule, and even programmed it into the radiation machines that send the waves through her head each weekday morning. Then he moved to Cleveland. Dr. Mansur accepted a post at a children's hospital in Cleveland and left St. Louis during Mal's second week in treatment. He assured us that we would be in great hands with his interim replacement, Dr. Maholski, and that his plan would be carried out despite the change in doctors.
When the nurse attendant called back, I fielded the phone call. She told me that she had confirmed Mal would be done on Thursday. I asked her who had made the decision to change Mal's treatment, and she told me it was never intended to be 33 treatments. I called her out on that, and told her that I had the paper from Dr. Mansur in my hands and planned on bringing it to her on Monday. She then tapped furiously on a keyboard I heard in the background of the call, and told me that Dr. Mansur changed it before he left, as the prescription he entered only consisted of 30 treatments. I asked her if she could print me something with Dr. Mansur's signature and a date that showed only 30, and she gave me a solid "maybe." I tried not to shoot the messenger, but I did unload on her with some pretty heavy terms like fiduciary duty, communication breakdown, and extremely upset. Seriously, Mal has a team of 8 doctors caring for her - not one of them thought it important enough to call us to let us know they decided to change her treatment plan?
Rachel and I have an appointment with Dr. Maholski on Monday, and so we will be digging into this issue more then. I have some serious questions for him. I'm not sure if any of that will change her new plan, or if I even want it to. But I am going to unload on that man in T-minus 32 hours. Until then, we will ride out the weekend with all the joy and thanksgiving we can muster. We have faith that Mal will be fine whether she gets the three additional treatments or not. She has been terrific through all of this, and we are certain she will continue to do so. But, none of that helps me with what to do with my graph. And so, I'm upset.
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