Dear Dr.___,
This is a typical week in my oncological life. I had three visits to your office. On Monday and Thursday, I came and received neupogen shot, on Friday I was treated. Neupogen, also called epogen is a miracle drug that stimulates the growth of white blood cells in the bone marrow. Its sister or brother drug Procrit for red blood cell production( was named one of the top drug discoveries of the century). This amazing drug and a few related drugs it possible to have continuous chemotherapy as I have had for eight and a half years. With it, the hematological effects of the chemotherapeutic agents I take called navelbine and etoposide are counteracted and I can have normal white counts on most days. As you know I receive two of these shots a week. Medicine is interesting because it is often about the current day. As a scientist, I am focused on trends and patterns. I focus on the past and the future. I try to use the past, to predict the future.
When a patient comes in for chemotherapy their CBC is measured and if one's counts are good, meaning if one has reasonable white counts, red counts and platelets, one can be treated. For white counts which one needs to fight infection, the count has to be pretty close to 4000 to be treated. The day I am treated, my count is usually OK. For years, I have stated that it is not the count on the day of treatment that matters, it is the count on the day of the nadir from the drugs one is taking.
I wonder what difference it makes if I have a moderately low count on the day I receive the drug, when the low point occurs somewhere later in the week. One thing I notice is I feel terrible on Monday into Tuesday. I normally receive a neupogen on Tuesday and on Friday, the day I am treated. I know that I have days where I have low counts that are just unstudied. So my thoughts are what is the point of the timing of these shots. Well, they certainly help, but I am also sure there are days I am vulnerable to infection.
This week was peculiar because I had doctors appointments all week and I had to receive my Tuesday shot on Monday. When I received this shot I am sure that my counts soared on Tuesday. Sometimes the second day counts will be on the order 13,000. I will have to put the units in for this being the chemist I am. I worried about this because I thought what happens if I sink too low to be treated on Friday, simply because of the timing of this shot. I actually come on tuesday to receive the shot most weeks so I will have a good count on Friday and be treated. I feel this should not be the motivation for the timing of the shots. This idea is a tough one to get across.
So this week, I was worried. On Tuesday, I went down and volunteered at the Susan G. Komen Foundation, a topic I will get to in a future blog and then went to see my brain surgeon who is a phenomenal doctor in downtown Philadelphia. As I have told you dr. ________, this is one of two or three doctors I would recommend to you because for you I have extremely high standards. This brain surgeon is the person to go to if you need brain surgery. Very smart and as cool as a cucumber. I don't mean he is a cold person, I mean he is cool, calm and collected. I will never forget my sister being with me when I had stereotactic radiosurgery and this brain surgeon was screwing a stereotactic frame into my head. I was all drugged up and I was yammering on about all sorts of ridiculous stuff to my sister and I can remember his cool and calm demeanor. Nothing we said distracted his intense focus and since that day, I have thought about how deeply I trust him to operate on my brain and there are not too many people you should trust to operate the brain. I would not be afraid if he had to cut into my head, though I still avoid conventional surgeries of all types as you knwo. He and I met and discussed the status of my two brain surgeons and decided I don't have any treatment from him now. We had some good laughs and some serious talk. He is a good person.
On Thursday, I woke up feeling terrible and I felt my counts were dropping. It happened the same day I had an appointment to have sort of major work done on my gums and teeth by a periodontis. As we recently discovered I probably have a little jaw osteonecrosis and when I went on etoposide, my whole mouth became a mess. It has been sore, my teeth hurting, my throat very sore. You have told me that this is a sign of the nadir of etoposide and this seems reasonable to em. I know from 8.5 years that when my counts are dropping, I feel sick (I threw up), I was shaking, had a headache, and my mouth was extremely sore as was my throat. I called your office and asked for an "extra" neupogen shot. The person at the desk did not know me and ten minutes later someone called me while I was at Mass. I left Mass and spoke with a nurse practiyioner who I also do not know. This woman told me I had to come in and get counts done and then they would decide about the shot. I stated I just wanted to get the shot and go to my periodontal appointment. I explained that I did not want the shot for today, I wanted the shot for tomorrow. In other words, I wanted my counts to soar to 13000 so I could heal from the bad dental work that was going to cause a lot of bleeding in my sensitve messed up mouth with jaw osteonecrosis. She stated we could discuss that when I got there. She said, "You know how quick it will be" Well your office is among the most efficient (my brain surgeon - the wait is an average of two hours), but one night I calculated that I have spent well over a work year just at your office.
When I arrived I stated my argument again. I said that I wanted the shot irrespective of the counts. I was not worried about today, I was worried about tomorrow. I wanted my gums to heal fast. I was refused and blood was drawn from my port-o-cath adn sent to the labs. I made the argument again and asked it to be stated to you.
You came in and thankfully gave me the shot immediately, but I wonder about all the red tape and rules. Why can't a shot be given in anticipation of a nadir and not in reaction to a nadir. It makes no sense to me.
My plan worked. My gums were a bleeding sore mess, but when those counts soared, I healed very nicely and rapidly and I feel great today.
This sounds sort of negative and I don't mean it that way, though it is not expedient, the neupogen shots would best be given in anticipation of a nadir (my request on Thursday) than in reaction to a nadir and treatments probably should not hinge on the days white count (unless it is ridiculously low).
I hope this makes sense. It is hard to be a doctor. It is hard to be a nurse, but wow it is hard to be patient. I find it is this intermable explaining of things to people who don't understand what I am talking about. People following procedures and not always know why, people only focused on the day, on the moment and not learning from the patterns of data. I sat this afternoon and realized it would take me years to teach new people how I think. Years.
Sincerely, Mary
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