Yesterday started out on a good note with the tennis round robin but did not end up so well.
The ride in to Boston for photopheresis was fine. I had the Turkish owner of Sonic Velocity who dispatched loudly from his phone and watched the monitor in his car but I didn't care because he is polite (unlike Kenny) and efficient and gets me there on time.
It was downhill from there.
The needle started hurting almost from the beginning. I asked for a heat pad, which usually helps, but it didn't. I gave it a little time but at about the fourth cycle of pulling my blood out (there are six) I asked Ellen, the PA, if I could have an xycodone. She doesn't like to give it to me. I have been through this with her before and ended up in tears because I only ask for it when the pain is intense. I try to explain that Melissa and Dr. Alyea prefer it for me, of course when used judiciously, as opposed to Tylenol (bad for my liver) and ibuprofin. I'm not sure exactly why they don't want me to take Advil and such but I just know that they don't.
Sometimes it doesn't hurt at all and I breeze right through it, watch a movie, talk to the nurses, read the paper, or fall asleep. Yesterday was not one of those good days.
Ellen said she would give me two extra strength Tylenol and come back in 20 minutes. In that period of time it started to hurt more. I said I needed something stronger and by this point I was writhing in pain and crying and thinking I might throw up. She said that there wasn't much time left (actually there was at least 45 minutes of hell) so it wouldn't make sense to give me the oxycodone because it wouldn't take effect until it was over.
She agreed to give me some Ativan under my tongue to calm me down. Rosalie held my arm higher. It took the pressure off somewhat. They said it must have hit a nerve. I was never so relieved to have that needle out.
I fell asleep in the car and could barely keep my head up at home because they had given me a whole milligram of Ativan. This morning when I woke up and wrote Melissa I was crying.
Ellen is going to talk to her about going every three weeks instead of two because my veins might be getting tired. I said to please talk to Ellen and explain that I know what I'm doing when I ask for the stronger medicine. One of the nurses said to just bring my own and pop it without asking but another said that is going against protocol. I don't like to take it for no reason but I might just take it before the procedure next time to avoid the pain and suffering of yesterday.
Melissa said she was fine with either talking to Ellen or having me take my own prescription beforehand or during. I'm leaning towards just taking it before so I don't have to worry about it.