Yesterday was my oncologist appointment. I went in to work for a few hours before the appointment. Upon arriving to the busy office, I was prepared, having already completed my new patient paperwork. I waited just about 10 minutes before being called back for vitals. After that, I was escorted to an exam room to wait for Dr. S, who is the oncologist/hemotologist for the intralipid infusions. He came in to get some quick info, left to ask a questions and came back. It was a very quick appointment and he gave me a paper with doctor’s orders to take down to the nurses in the infusion room.

The room was full of hospital-type recliners and several had patients lounging while receiving their treatments. They are primarily giving chemotherapy at this location. I was called up by one of the nurses and they reviewed the protocol with me. It was explained that I would “brown bag” the IV, as their on-site compounding pharmacy did not have what was required for the protocol ordered by Dr. B in NY. I was asked to call my doctor to have the RX filled and then to call the nurses back to set up a time to come in.

Time is of the essence right now, as I began my estrogen pills and patches last week and needed to begin the infusion within the same week. I went to the parking lot and called my RE, who’s office was just across the street. After speaking with a nurse, she requested that I call NY to have them order the infusion, since they would know the exact formula. I called NY, but the IVF coordinator was not in the office at the time and would be calling be back around 3pm.

I was leading the adolescent group at 3 yesterday, therefore I had the other therapist join me so that he could take over while I took my phone call. At 3:40, I had not received a call. It was almost 5pm NY time, so I stepped out to follow up. The IVF coordinator was meeting with another patient, but knew I was waiting on the call from her and would be calling me back next. I received the call about 20 minutes later. I spoke to her and she said that as much as she would like to be able to call in the script for the infusion, she was unable to do so because she was in a different state and that technically they are consultants and not providing direct care over my case. She said they had worked with my doctor’s office before and had never really had a problem and directed me to call them back and if my doctor’s office needed anything from her, they could call her.

I called the nurse back and was transferred and on hold for about 15 minutes. I finally was able to speak to one of the nurses who said she would call in the script and would then call me right back. She called back about 15 minutes later. The other therapist had been in with what was supposed to be my group for 1.5 hours at this time while I was attempting to get this all straightened out. I had gone back in to let him know that he would need to finish group. I keep feeling guilty. I feel as though I am dumping my responsibilities on others. Others I work with have been trying to re-frame things for me and I agreed that if it was someone else going thru the same thing, I would help out, no questions asked…but it just feels different when its happening to you.

The nurse gave me a number to a woman with a home health pharmacy. The nurse was going to fax my records to this other woman, but suggested I go ahead and call her to find out how and when the infusion would happen. The home health lady told me that they would call back with a price the next day and that the nurses at this new location would call me to tell me what time to be at the appointment. With this particular infusion, they cannot do it at my house, they have to have me at their site. 

It was just before 6pm yesterday when I recieved the last call. It was the nurse from my doctor’s office letting me know that everything had been faxed and that I would get a call from them the next day. As crazy as this process is, I’m glad that it is an option and that we have been able to pursue all of this. Even though some days I feel like I might pull my hair out.  

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