Thursday, January 22, 2015

Not a good soilder this week

The plan, on Dec 4 when I first met with the Radiation Oncologist who would manage the radiation therapy part of my treatment, was to complete 3 3-week cycles of chemo, then start the radiation therapy the next week. Maybe I misunderstood. But the multiple times I discussed this with my gyn oncologist, that was his plan and understanding too. And my chemo nurse Elizabeth says when they have done this complete-half-the-chemo-do-Radiation-Rx-then-finish-chemo thing that is how they have done it in the past. And that was the plan my gyn onc described to me when I met with him Thurs of the next to last week of my chemo, and he set up the appts for me to get a CT the following Thursday AM (thursday of the last week of my chemo) in time to have it available for the Rad Onc doc when I met with him in the afternoon. So imagin my surprise when i got to that appt and the Rad Doc was away doing mission work. And I was informed by his senior partner that after he returned the following Monday (last Monday) it would require at least 3 weeks for them to do planning before we could start. What? If any patient of mine with advance cancer that had recurred came to me and said "I have only completed half my chemo but I am going to just stop and think about things for 3 weeks" I would tell that patient "you are compromising your therapy and jepordizing your life". I dont see how this is different because the life in question is mine and the people deciding to stop and think are the docs. It is also not clear why it takes 3 weeks to plan. I know it requires lots of careful calculations of dosing, but surely these days they do that on the computer instead of by hand using an abacus. It was also not clear to my gyn onc's office, and it turns out that with enough calls from me to my gyn onc saying "I am not willing to take a month off, if we can't start radiation now I want to complete chemo uninterrupted and then consider whether to tag on radiation at the end" and enough calls from the gyn onc office to the rad Rx office - the planning could actually be completed in 3 days. It did require the doc to come in on his week day off to get started. Ask me if I feel a bit sorry for him. He had 2 months to plan before he went off on his mission trip. I dont want to sound indifferent to the health of people in the developing world but (1) my life matters too and (2) i have done work in that setting. Surgeons, immunizers, dentists and nurses are a god send. Primary care docs like me can't really do much good if we lack access to sophisticaed diagnostic testing and pharmacologic interventions. So now after an anguished (not an exaggerated description of my response) week and a series of distresed calls to my gyn onc office it appears straighten out. I start radiation therapy on Tuesday next week after only one week off (this week) with no therapy. The CT did identify ongoing hydronephrosis in the kidney that was freed up at surgery. I met with my primary care doc here at Emory about that today. He is arranging for me to be examined by a urologist next week for a decision on whether I need a stent placed (something like a hard drinking straw that will open up the strangulated area and keep it open). Comments from the Radiation Oncologist during our Dec 4 meeting or our meeting last week: "Well you are a doctor, what schedule do you think we should use?" This in response to one of my questions, an absurd question equivalent to a NASA physicist saying to me "Well you are a doc, what thrust do you think we need to get this rocket off the ground?" In response to my request for a description of a profile of the most common side effects and the liklihood of each one: " Well probably the worst you could get would be a malignant fistula. Ohh that would be terrible. They happen fairly often." Not according to the literature I have recently read. And what the heck? the usual response would be something like " the most common side effects are X and Y and maybe 5 - 10% of people experience them"... or some such. he does not need to tell me a malignant fistula could be awful, I am aware of that. In response to my statement that I have an appt with my internist to evaluate the need for a urologist consult and stent: " I think that is a good idea. As you know, some people have no problem with stents and others are very much bothered by them." No, I was not aware that stents were an ongoing source of discomfort for many people. What the heck. Is he trying to place that idea in my mind? I dont know if this guy is just socially very awkward or subtly sadistic guy who uses his position of authority to plant suggestions of bad things happening in the minds of people already dealing with potentially lethal diseases. I do know that I will not be recommending him or seeking his service as a physician again once i get through this radiation. And if I had it to do over I probably would go back to emory instead. Although My gyn onc office keeps telling me these people are very competent and they have never had this sort of experience with this practice before. Which raises the possibility that maybe he is a misogynist who is insecure about treating another physician. Fortunately i am pulling myself back together after seeing my primary care doc today, who is very efficiently and supportively managing my urology consult and who assures me I was not over reacting. And on the personal side, my beloved hound Balsam either liberated himself from my back yard or was liberated while I watched the STate of the Union address Tuesday night and has not been seen or heard from since. I have notices on 3 websties, paid his microchip company to send alerts to all vets and animal volunteer organizations in the area, and a local homeless man who soliicts work in our neighborhood spent the day walking door to door asking people if they had seen Balsam and tonight riding around helping me put up Missing posters with Balsam's photo all over the neighborhood. So people are good. And this weekend I have another meeting of the organizing committee for the reunion of the Mac class of1975 - a chance to have fun with old friends and relax a bit. Things are looking up. So I have been a pretty good soldier for 5 years. i guess I am due one melt down. Tomorrow is another day.

1 comment:

  1. Oh my, Louisa, "what the heck" is just so you... my language in this situation would have been way WAY less ladylike! Something more on the lines of "what the actual f...k!!" So sorry you had to endure this guy's social ineptitude (I am giving this the benefit of the doubt here in hopes that he is a top notch rad onc doc and just a dickhead personally). If I am reading the dates right you will be starting radiation tomorrow, Jan 27, right? Crossing my fingers and toes that none of the aforementioned troubles come your way. And I so so so hope that the hound shows up - funny how they just seem to know when we're under stress and can't bear it and take a break. Best of luck to you and keep in touch! Kathy O