Tuesday, January 27, 2015
Just finished my first radiation treatment today. I was called last week and told my first treatment would be at 4:30 pm today. I asked about subsequent treatments, and was told I would be given more information after my first treatment today. I explained that in my job I was expected to make arrangements and get leave slips signed in advance rather than just not showing up when it was inconvenient. As a result if they wanted me to return tomorrow I would need to be aware of that appointment in advance of close of business today. After what seemed like a stunned pause, I given 4:30 pm appointments for the rest of this week (Today Tuesday through Friday) and told I would get the remainder of the schedule today. Between then and now I had to schedule a Urologist appointment and was offered 4:30 PM on Friday 3/6 as the first available appointment. I took it, as I needed to find out whether I need a stent and in addition it seemed a safe bet that I would not be getting appointments after this week at 4:30 pm. But today when I showed up I was given a calendar by a cute little nurse (or technician or...) that showed 4:30 pm appointments every weekend starting today and ending the last Monday of February - 20 in all. Since the radiation oncologists had been talking about 6 or more weeks of treatment, I asked if this calendar represented the entirety of the planned treatment schedule or merely the part that had been scheduled to date. She told me she did not know. I asked who did know and when I could find out. She told me usually on Wednesdays after treatment I would have opportunity to meet with the doc and that I could ask them. Let me point out that this is the third conversation I have had with someone from this practice over the past week trying to get clarity about what my treatment schedule will be. She seemed to think it odd that I felt I should know now how long this treatment will continue. I find it bizarre that I am having so much trouble getting clarity on the schedule and even now it is now clear. And that I need to wait for another appointment and again the convenience of the doc before I can get an answer to that very reasonable question. Then I explained that I would need to reschedule the one for 4:30 next Friday 3/6 because I have a Urology appointment then. She seemed startled that I had anything interfering with the schedule I was just provided. I explained that since I had discussed at least 3 times that it would be best if I could come in the AM, I thought that a PM Uroloigst appointment was least likely to interfere with the schedule for radiation when I finally received it. I would have been glad to schedule around their appointments, but I had been unable to get any info on what that would be. I asked if I could reschedule that specific appointment today. It was explained to me that I can't do that until maybe Wednesday of next week. My request that I be able to schedule now so I could plan resulted in it being explained to me that I cannot receive so much very special treatment that it disadvantages other patients. I cannot describe how cynical I felt, but I suspect it showed on my face. I explained that I would have been happy to schedule the Urology appointment around the radiation therapy appointments but I was unable to get any information from this practice regarding when my radiation appointments would be, so I was forced to go ahead and schedule the Urology appointment. I also stated that it was not my impression that I had been getting a lot of special treatment. In fact it was my impression that this practice was more indifferent to the needs of patients than any other practice with which I had been associated as either a patient or a physician. She seemed to think I was way out of line, but asked specifically what time in the afternoon my Urology appointment was for that Friday. I had not brought it with me so was uncertain of my memory but I am pretty sure (can't check till i get back to my office tomorrow) that it is an exact conflict at 4:30. I did not tell her that, however. I told her that it did not matter what time it was since if we tried to schedule this appointment any time that afternoon I would have to complete the appt, travel back to Atlanta and from there up to Marietta GA in time for the next appointment. It is not feasible to plan this all in one afternoon. I need an appointment in Gainesville in the morning on that particular day. I have to wait until next Wednesday to see what slots are leftover to be able to schedule anything. I continue to be very unimpressed with this practice. They seem oblivious to patient needs. First treatment went smoothly I guess, although a bit uncomfortable. I now possess 3 tattos. And since the senior partner in the practice did come into the treatment room afterward to speak to me I took the opportunity to ask him if the schedule of 20 appointments I was given was the entirety of the treatment or only the part of the treatment they had scheduled to date. He checked and confirmed it was the entireity of the treatment - so it was possible and apparently even easy to confirm that. I did not bother trying to reschedule the appt for next Friday today. I will wait another week and just assume I will have to take that entire day off work. the good news is, now that I know my radiation treatments will routinely occur at 4:30 for the next month, i can plan around not needing to leave work until 3:30 or given rush hour commuter traffic, maybe 3 pm. That is helpful. AT last, something helpful.
Thursday, January 22, 2015
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.
Sunday, January 11, 2015
Met with my doc last Thursday while in for lab check. Tomorrow is my third Monday (treatment day) in the 3rd 3-week chemo cycle. Here is the plan going forward: This coming Thursday I meet with the Radiation doc. We will hold on chemo following completion of this 3rd 3 week cycle next week and switch to radiation therapy for somewhere between 4 - 8 weeks starting either a week from tomorrow or 2 weeks from tomorrow. Exact decisions to be determined by my radiation therapy doc and hopefully transmitted to me during our meeting this coming thursday. Also on Thursday I will have the first CT scan since surgery, which will tell us more about whether and how to target radiation and influence whether and how we move forward with this plan. Following completion of the radiation therapy, which will require daily treatment 5 days a week, we will return and complete the remaining 3 3-week cycles of chemotherapy. So far I am doing well although my stamina had diminished and despite my vow to prioritize keeping up on personal issues like paying bills instead of prioritizing work during chemo, I am getting behind. I have to begin each day with a priority for what I will target. Yesterday I managed to empty the dishwasher and reload it by cleaning up the kitchen, but that was it. Today I am running the dishwasher and doing laundry. Have about 4-5 loads collected - uncertain whether I will get through all of them. Cleaning out the fridge is over due but may or may not happen today. Catching up on bill paying and paperwork filing is also over due and is beginning to appear to look unlikely to be completed today. Perhaps I can carry that material along and complete some of it while receiving chemo tomorrow...time and my energy levels/concentrating ability will tell. I continue to receive good support from my friends, colleagues and folks form church here for which I am grateful.
Saturday, January 3, 2015
Last Monday was the first day of the first week of the third chemo cycle. It was, as I am growing used to, a new experience. To that date I had on more than one occasion had reactions to Taxol, the drug I receive weekly. But last Monday I had a reaction to the Carboplatin - the drug I receive only on the first Monday of each 3 week cycle and a pretty important drug in my treatment regimen. The reaction is hard to describe ... first I found myself very restless and spent much of the time standing up facing the nurses (because it seemed rude to face the other patients). I attributed this to worsening of the restless legs syndrome that I get in response to the IV benadryl, and also a worsening of the neuropathy in my feet. But it was hard to understand why these should be particularly worse last Monday. I went back and forth to the bathroom several times, and the third time I suddenly noticed the palms of my hands were all bright red. Then looking into the mirror I realized that my entire face was swollen and bright red. I went out and showed these to the nurses, who leaped into action shooting me up with (I think) more IV benedryl and steroids. Elizabeth (my chemo nurse) tells me that this reaction to carboplatin is more common with restlessness and I should try to sleep through the chemo. But I am not sure of the cause and effect. I did try to be still and sleep, wiht limited success. But I could slowly feel little shooting stars of relaxation in various parts of my body in response to the IV meds they gave me, and I suspect that perhaps the restlessness is less the cause than the sign of an on going reaction that led to the final red face and hands and whatever. Either way, i have decided that it is time to again start recruiting drivers for my Two drug Mondays so that the nurses can treat me with any drugs they want wihtout an iota of thought as to whether I can safely drive myself home. Another week, another adventure. Since Carboplatin is the corner stone drug for my treatment as long as my disease is sensitive to it, this reaction is not necessarily a good thing. Not really a good thing at all. Guess we will have to proceed with caution and hopefully it wont happen again. Beyond that life continues to move smoothly. My Arkansas childhood friend Barbara Breen is visiting from her current location in Iowa at Grinnell, which has been fun. And my sister called to say she and Joe are moved into their new place in Raleigh and when can they come help me. I meet with my doc next Thursday and will have a more certain understanding after that. But if we stick with the original plan, after the next 2 weeks complete the 3rd of 6 chemo cycles the plan is to switch to radiation therapy for 4-5 weeks, then return to complete the last 3 cycles. So Martha tentatively has the start of the next cycle marked on her calendar ... about early March... and I will count on her support them.