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Last Year's Diary

Medical Diary, 2001
Year Six Living with Cancer


July 2
Call-in: Neila has been really spaced-out with the 50 mg/h Duragesic®, so much so I called Dr. Sharma's nurse, "Cathy" this morning. Since he doubled her dosage of Duragesic® (to 50 µg/h), I am running out and it is one of those prescriptions that has to be done in original, triplicate copies. With the 4th of July holiday coming up, I needed to act today so she wouldn't run out. Nurse Cathy confirmed 50 micrograms will make most people extremely drowsy and is probably causing her disorientation. The nurse asked some questions about "breakthrough" pain. This is when she has episodes of pain that "break through" the level of comfort the patch gives her. If she is constantly asking for more pain killers, then we need to increase the background dosage but using a second patch. If she is experiencing this 'break through" pain only episodically, then the best procedure would be a stronger medicine just for that episode. She questioned me about what pain killers she has been taking, (Dilaudid®, but more recently, Acetaminophen (Tylenol #3) Her recommendation was to set the Acetaminophen aside and take a new medicine, OxyIR®, that she would prescribe. If she starts asking for the OxyIR® constantly, then and only then should we increase the Duragesic® patches. Cathy also said that Neila should NOT take Celebrex® and Alieve® at the same time. Even though Alieve® is over-the-counter, both are "nonsteroidal anti-iflammatory agents" and it would tantamount to overdosing.
Wednesday, July 4 Medicine Change Neila decided to remove the Duragesic® patch today. Because we suspect much of her present symptoms--including weakness, disorientation, aphasia, nausea, vomiting, difficulty in waking and lack of equilibrium--are related to it I agreed immediately. We will see.
July 6
Office Visit with neurologist This was billed as a follow-up with the neurologist she saw during her May hospitalization, Dr. Krampitz. He suggested two possible sources of her symptoms: drowsiness and disorientation are often associated with pain medication and drugs for sleeping, while nausea and vomiting can be the result of increased pressure on the brain and related to the tumor or radiation. He immediately recommended eliminating Elavil® as being redundant and just adding to her drowsiness. He questioned us thoroughly about the Oxy-IR® and Duragesic®, but made no other recommendations about Neila's medications. He requested an "amonia" liver test, and a new MRI of the brain. He did several motor control tests with her, and suggested she would benefit from physical therapy, but did not refer us to anyone.
Thursday and Friday,
July 12-13
A Fall in the Night Last night (Wed.), Neila had two falls during the night. The first time she lay there forever, unable to get up and with her voice very weak these days, unable to yell loud enough to wake me. I woke up eventually anyway, helped change her clothes and got her back in bed. I made her promise me not to try to go to the bathroom by herself again. I don't have to tell anyone who knows her that she didn't listen and didn't call me a couple of hours later. It was already almost 7:00 am and I was probably begining to wake up when a very loud thud roused me suddenly. It was Neila; she had fallen backwards and against the protruding corner of the wall. It was the worst fall she's had. She couldn't move and was crying from pain. I checked as best I could for anything broken, and slowly eased her up and back on the bed. She was crying with pain at just about every move, but because she was able to support her own weight on her two feet and move them I decided not to take her to the ER, and waited until 9:00 am for the doctor's office to open.

It was 10:00 am by the time I got through to Dr. Sharma's nurse, Cathy. She asked a number of questions about the nature of the fall and what Neila was feeling--the pain is primarily in the small of the back on the left side, it is continuous, and she can walk though with great difficulty--to conclude that nothing is broken. Unless something changes, Cathy did not recommend taking Neila in for x-rays at this time. Instead, monitor her closely and apply two of the Duragesic® pain patches.

In the 48 hours following the fall there has not been any observable change, but the pain continues unabated in spite of the pain patches plus the maximum dose of Oxy-IR®.

July 16
Office Visit with Gastroenterologist: This was a referral as a result of the "amonia" liver test Dr. Kampitz requested. The test showed a high figure for amonia, but not absurdly high. The gastrointerologist, Dr. Nunez, said the figure was suggestive of a low-grade liver problem such as a few tumor cells before there enough of them to show up on a scan. That isn't the only possibility, but the other common source are certain medicines. Not, however, the ones she is taking. He wants the test repeated to confirm the results and to review the scans Neila has done previously and will be in touch with Dr. Kampitz.
July 17
Office Visit with Dr. Sharma Reviewed the leg and lower abdomen x-rays Dr. Sharma had requested on our last visit, and both were negative. Neila is still suffering from pain, and when he asked her to rate it on a scale of 1 to 10, with 10 being the worst, she said "8." To deal with the pain he prescribed more Duragesic®. Since her fall she has been using 25mg/h, so he gave us a new prescription for a 50mg/h patch, and recommended we combine it with a 25mg/h to give her a total of 75mg/h. She is also having problems breathing and he recommended a respiratory specialist, Dr. Mintz. He also noted the high amonia, but for his part there is really nothing going on. He thinks the two specialists, Drs.. Nunez and Mintz may be able to give her some relief, and wants to see us again in two months with a new chest x-ray
July 19
Call from gastrointerologist: Dr. Nunez called with the results of the second amonia test. Her amonia level was 95, down from 154 on the earlier exam and he could not find any evidence of liver disease. He had not seen the abdominal CT scan reports, alluding to some problem getting them from SW Diagnostic, and reserved final judgment until he does, but was confident enough to place the call. I asked if that meant her current problems were not related to the amonia level, and he would only say it was unlikely. The only way to know for sure, though, would be to provoke diarrhea to clean out the liver, and that would not be recommended in her condition.

MRI of the head The MRI Dr. Krampitz had requested had been scheduled for July 12, the day Neila fell, and was rescheduled for today

July 23
Call from neurologist Dr. Kramptiz's nurse called to inform us the MRI did not show any change.

Office Visit with Dr. Howard Mintz Dr. Mintz is the pulmonary specialist. His conclusion was that Neila's shortness of breath is due to restrictive lung disease, and there may be additional problem caused by her recent fall. He ordered a new x-ray for comparison, and will call if anything else can be done. A novelty, he supplied us with a copy of his Patient Notes at the end of the visit. top

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