Thursday was chemo day once again. This is the week when I do not have a clinic appointment. I just go the Infusion Treatment Area for a lab draw and then get my chemotherapy. The drugs and dose are the same as last week so there is no need to see the doctor as well. Bob is out of town this week, which turned out to cause a delay in other matters related to my pain management, but I will get to that later. I had a 9 AM appointment that meant driving to the Cancer Center in rush hour traffic. It was a hassle getting Josh out of bed and then getting him out the door, but we managed to arrive relatively close to our appointment time, cruising into the check in line at 9:08. We then had to wait 30 minutes before being called back for a lab draw. All labs for chemotherapy patients are run stat. This means the results are supposed to be back in one hour. We planned for Josh to drive up to the new Pain Clinic location in Redwood City to pick up my narcotic refill. I called the pain clinic on Wednesday to let them know that the Fentanyl patch is not lasting the full 72 hours. Dr. Carlson suggested changing the patch every 48 hours as the patch does give good pain control for the first 2 days. On the third day, the pain returns in my neck, back and legs. I can use the Dilaudid for breakthrough pain but I am still having a gag reflex when I try to take my pills. I already have to take 22 pills a day, without adding any more for breakthrough pain. The pain clinic set up a system where you can email them your current question or problem and they are supposed to call you with a solution within 24 hours. When I did not receive any response to my emails, I started calling them at the new location in Redwood City (Stanford’s new outpatient North Campus). I found out the email system has not been transferred to the new location, but there is no notice of that on their website. So, on Thursday I arranged for Josh to pick up the prescription while I got my chemotherapy. Redwood City is an hour away from the house and 20 minutes from the Cancer Center. Rather than changing the time interval between Fentanyl patches, the physician wanted to increase the dose. Josh thinks this is to prevent abuse of narcotics by patients who will store up extra patches for the time when they cannot get a prescription. I do not think this philosophy should be applied to terminal cancer patients. There is no point to storing up narcotics in my case.
When I was able to speak to someone in the pain clinic, I learned they mailed the prescription to the Walgreen’s in the Cancer Center on Wednesday. I told the clinic’s MA I had specifically instructed them NOT to mail the prescription because I was wearing my last patch and the pharmacy told me it would take a week for them to get and process the prescription. The reaction was for her to get defensive about the fact that I did not speak to her on Wednesday. I thought this was a very strange reaction. I then suggested having one of the doctors at the Cancer Center write me a prescription so that I could fill it while I was at the Cancer Center. The reaction to that suggestion was even more bizarre. I was reminded that I had signed an exclusivity contract with the pain clinic when I first became a patient (in 2005). This contract stated that all of my narcotics needed to be prescribed by the pain clinic physicians. I felt like a suspected drug addict or possibly a patient who made money by selling their prescribed narcotics for a tidy profit. The response I wanted was concern that my pain is controlled rather than harassment as to who writes the actual prescription. There should also be concern that I am not put into physical withdrawal due to a mix-up in whether the prescription was to be picked up or mailed to the pharmacy. At the end of the phone call, the MA (medical assistant) agreed to ask the physician in the clinic whether he/she would be willing to re-write the prescription for Josh to pick up. I was to wait for her to call me back. Two hours later, I had not heard from her so called the pain clinic again. At that time, she was out to lunch and would be gone for 30 minutes. I left her a voice mail, explaining again that I lived an hour away from the clinic, I was wearing my last Fentanyl patch, and that my son was still waiting to hear whether he should drive up to the clinic for the prescription. I waited an hour and a half, a total of four hours since my first phone call to the clinic, before calling again. The prescription was not at the front desk. The secretary said she would go look for it elsewhere in the clinic and call me back. In the meantime, I paged my physician’s assistant in clinic to see whether she would be willing to write me a prescription for at least a couple of patches to cover the time it would take for the pharmacy to receive and process the prescription that was mailed to them on Wednesday. I also called the pharmacy to ask whether they received the prescription in Thursday’s mail. They did not. My PA was willing, but unable, to write the prescription because she needs Bob Carlson to co-sign narcotic prescriptions for her. From the beginning of the blog, you know that Bob is out of town until Monday. Finally, at 3 PM, the pain clinic called to say the prescription was found sitting on the desk of the physician and I sent Josh to Redwood City to pick it up. I wonder what would have happened if Josh drove to the pain clinic at 9:30 AM without my calling them first to make sure the prescription was ready when he got there. His original plan was to drop me off at the ITA and leave right away because if you take the car out of the parking lot within the first 45 minutes of parking, there is no charge for parking.
While I was dealing with the pain clinic on the phone, I was also trying to get my chemotherapy started. My labs were drawn shortly after 9:30 AM. My blood counts were back in a little over an hour, but two hours later, we still did not have the result of my metabolic panel. This is needed because the dose of Carboplatin is based on my kidney function and a test result called the serum creatinine. The pharmacist cannot mix the carboplatin without knowing this value. When the results of my blood chemistries finally came back, the creatinine was fine but my liver function values were elevated again. They have been elevated almost every time I get chemotherapy, but the increase over last week was enough to trigger a call to the PA to make sure she still wanted to give me chemotherapy. She did. From my appointment time at 9:00 AM until my first premedication was given at 12:53 PM was almost 4 hours! I should have finished my chemotherapy by that time. Everyone who was in the infusion room when I arrived was gone by this time. I even managed to move over to a chair by the window when that person left. People who came into the infusion room after I was there were also gone, having finished their chemotherapy before I even started mine.
The Gemcitabine was given first and took slightly more than an hour to infuse. During that time, I called MetLife to attempt to get a quote for continuing my life insurance, Downey Savings about transferring my IRA to my TIAA-CREF account, Bank of America about my missing ATM card and shopped online for a color printer/scanner. I also talked to Gabby and found out she will perform in Onegin on April 17 and April 19. The Carboplatin was started at 2:05 PM while Josh was en route to the pain clinic. I asked him to get me something to eat on the way back because my empty stomach was starting to churn out acid. He has a class at 5 PM so we needed to rush home once the chemotherapy was done. It was going to be very close. The carboplatin takes about an hour to infuse and then I needed to have my port flushed and disconnected. We then had to pack up, get the car and hopefully get on the freeway before rush hour traffic was too bad.
The battery on my computer was dying out while Josh was gone. I stood up and tried to plug in the charger but my oxygen tubing did not reach far enough to get me to the plug on the wall next to my chair. Directly behind my chair, I saw several available outlets, so I turned around to use one of those. In doing so, I must have pulled the call light cord out of the wall because there was suddenly a rush of staff around my chair looking at me. I had no idea why they were there and they did not say anything. Later, when my IV pump alarmed, I looked for the call light to let my nurse know about the pump and found both ends of the cord in my chair. I used my voice as a call system and it seemed to work just as well. The patient in the chair next to mine had the curtains pulled all around her chair for privacy, which blocked my view to the nurses’ desk and their view to me. Staff in the ITA and in the emergency department rarely makes certain I have a call light nearby when they leave my area. When I need to call for assistance, I have to go hunting for the call light. Usually I look behind the bed to see where it is plugged into the wall and then reel in the cord until I find the call button.
I read a couple of interesting articles in the Oncology Nursing Forum while my chemotherapy was infusing and Bev came over from F Ground to visit in the morning while I was waiting for my lab results. I did some work on the internet and made many phone calls. Josh arrived from the pain clinic and Walgreens just as my nurse was removing the Huber needle from my port. He wanted to stop at the Oriental market on the way home to buy fish for dinner. He planned to make sushi. We made great time on the freeway, using the carpool lane. I waited in the car while Josh ran in to shop. While he was in the store, I opened the bag from Walgreens to check the prescription. It was supposed to be for Emend, the anti-nausea drug I take on the first 3 days of my chemotherapy cycle. When I looked at the bottle, I found the wrong drug! A perfect end to the day. I called Walgreens to ask why they gave Josh Ativan instead of Emend. Emend is a difficult drug to find as it is expensive, relatively new, and only used for chemotherapy patients. It was going to be impossible to drive back to the Walgreens at the Cancer Center to get the Emend, so they offered to call other Walgreens in San Jose to see if I could get the prescription filled closer to home. They found a pharmacy that is 9 miles from the house and I arranged for them to have the prescription ready for pickup after Josh’s seminar.
I have not included everything that happened in today’s blog entry. Believe it or not, there was more. I did register a complaint before leaving the ITA. I feel that 4 hours is too long to wait for my chemotherapy to start. I should be done with chemotherapy in that amount of time. If I arrive at 9, my labs should be drawn by 9:15. There is a sign in the waiting area asking patients to inform the receptionist if they wait longer than 15 minutes for their appointment. If the labs are drawn by 9:30, the results should be back in one hour. I can give the pharmacy another hour to make up the drugs which means my premeds could be given at 11:00 and the chemotherapy started at 11:30. Infusion time for Gemcitabine is about an hour and it is followed by another hour of Carboplatin. Chemo should finish by 1:30, followed by 30 minutes to flush the line, disconnect the Huber needle and send me on my way. We could then beat rush hour traffic and be home in plenty of time for Josh’s class without having to rush. If you remember last week’s blog about chemo day, we were at the Cancer Center until 7:40 PM following an appointment time of 11 AM for lab draw and 12:45 for the doctor.
I know that hospitals are feeling the impact of the economy. The hospital is full all the time, but is not being reimbursed for many of the patients who have no health insurance. This number has been rising steadily. One hospital in the area has closed its doors for two months while it reorganizes under new management. This put a strain on all of the other hospitals in the area. Patients cannot be turned away without being evaluated first. This is having an impact on the emergency department where the wait is long. Cancer patients can be seen in the ITA rather than the emergency department, but this impacts the amount of time patients in the ITA must wait for their appointment. There are a finite number of beds, a finite number of nurses and a growing number of patients. Add to this picture the fact that the outpatient area has recently gone live with the new EPIC computer system and nurses are still learning to work with this system. Many patients complain their nurses are always looking at the computer rather than spending the usual amount of time interacting with patients. I keep thinking about a conversation I had with Rep. Zoe Lofgren last time I went to lobby for health care. She told me the health care system was not going to get fixed until everyone realized it was broken. I do not know how we are going to accomplish this. People who are not impacted by health care do not want to think about it. This is not an issue that is going to go away or get better on its own. The system is not only broken, it is going to start resulting in increased mortality if we do not do something about it NOW. I have been trying to improve access to quality cancer care for all Americans since my sister died in 1986. That is a long time to work on something without seeing significant progress. It is hard not to get discouraged. It is exhausting to deal with insurance companies, benefits departments, the billing department of the hospital, social security and pharmacies almost every day when my focus should be on helping myself feel physically better. I do not want to sound like a whiner, but I need to know this is going to get better. Can anyone promise me the bureaucracy of illness will consume less of my time every day so I can focus on feeling better?
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