Fastpass to Scripps Next Time!

Wow, my visit to Scripps was certainly either a skit from Saturday Night Live or just the comedy of errors. Jim and I had to laugh at times because it was either that or the alternative. We were told to be there early to run some tests including blood. So, after 10 minutes past the early arrival time, the entertainment started. Even though I had responded to numerous emails and these people had seen me in person, they still believed I had a port. I told them I didn’t have a port which caused some major confusion and no one knowing what to do next. Then, after 20 more minutes of “research” because I don’t have a port, I asked again, but now there wasn’t a chair available. After thinking the mystery was resolved, I was told to go back to the infusion room. Unfortunately, this was my first visit, so I had to ask several people how to find this room. I started walking down the brightly lit hallway to see a dark room, blinds closed, and door closed. Of course, this had to be it. This is where you would obviously treat cancer patients. This is a closet unlike any other I had seen. Plus, for some unknown reason (since these people were still ALIVE), the temperature was below freezing. It was a strange set up and was designed by someone who thought the nurses should have the best view because they are sitting so much and not tending to patients? The nurse’s station was facing the windows and the lazy boy chairs were sitting side by side facing the wall. All these patients did not look that good, but who would with such a great environment. Plus, I noticed the bags of drugs just hanging on a pole with no meter to measure the amounts or slow the drip if necessary. No wonder these women looked sick. There were 2 nurses in this closet. One had to ask me about my invisible port, so I asked her if I get one as a souvenir today. The other was looking for my orders. The first nurse asked me my name and asked me where my orders were? Who is on first and who is “in charge”? This back and forth went on for a good twenty minutes. After the order was found by the clinical research nurse, the game began with the find a vein and oops, let’s not use that big needle. After this, the game went to how many tubes do we need? I decided to do some upside down reading and read the orders. Once I confirmed these orders with the research nurse, I asked for the labels to label my tubes. Oh no, they don’t have labels. Okay, I joked first when I was attempting to find this closet if I had to BYOC (bring my own chair) and now this is  BYOL (bring your own labels).  This was definitely a game of treasure hunt. Who could find anything in this dark room? I wanted to yell, “turn on the sunshine and lights for these cancer patients AND turn their chairs around”. My research nurse brought the sharpie and tubes were labelled. Do you think I left my precious blood without watching it leave the room? I sat with  my tubes like they needed me to hold them in my hands or risk rolling off the counter and starting this process again.

Phase 2 came with the addition of the waiting game of, “oops there is no examining room” followed by, “oops, what is this lymph node”.  The clock kept ticking by and there was no oxygen in the room. Luckily, Jim was still thinking and opened the door. We did the back and forth of waiting for the doctor, the doctor left, no the doctor is late, no the doctor is here. We informed everyone who would talk to us that we have never had such an experience and if the doctor is late, you call the person! When we got into the room, the examine had to happen before this magical vaccine could happen. In my exam, it was discovered a swollen lymph node (or so we thought). The more it was pressed, the more it hurt. Nothing phases me anymore. After THE doctor arrives, the question of the lymph node disappeared. This is a ligament that you can only feel in thin women. Good to know that they have a lot of experience in heavier women? I also learned this tidbit in case I couldn’t feel this area, to know that I am gaining weight?!

Finally, the moment had arrived with my vaccine. The vaccine is in a giant box with dry ice. I joked (kind of) that this vaccine was for Bob who has prostate cancer. I wanted to know that this was my vaccine and these were my cells. We asked many questions to confirm every step of the way since this was proving to be a bit frightening.  I was also informed that the vaccine gets bumped off the flight if there are animals flying in the cargo area. As Jim said, did they find this out after an animal was harmed in this vaccine trial?  There was so much paperwork just to take these teeny tiny vial from the giant box. After the checklist was done, the moment came. I had to mention about my previous surgery removing my lymph nodes (since no one read my chart) once they explained that the multiple injections are to reach the lymphatic system. We had a discussion about the sites which was quickly resolved as I was losing my patience. We did get a catered doctor lunch that a pharmaceutical company brought. We definitely deserved a medal or something after the continuing sagas on this trial  journey! We did have the time to ask one question: is this working for the patients in the trial? The answer after a careful game playing since they cannot really tell us the answer is that all the women in the trial are still in the trial meaning that their cancer did not come back because they would have to leave the trial.

The injections were not so fun, but I am happy to report that with only some minor side effects-all is good!! This is nothing compared to chemo! We are now fully prepared for the next time in one month. I did ask the doctor if I can get a fastpass next time and avoid the mishaps and calamities of errors. She said that I could, but I never got it in writing! Just chalk this up to another experience in the journey of cancer treatment!

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