Wednesday, December 29, 2010

The Process

We made it to the hospital in Tampa at 7:15 as ordered. Valets whisked our car away and we went up to Dr. Weber's office. After a brief wait we were taken back by a "nurse", vital signs were done, and we were placed in a room, waiting on the doctor to do a physical. (Went from docs who never do real physicals to one who is zealous about it!!!) After the exam Weber reiterated things we already knew about the study, including the risks and hopeful benefits, bit the bullet and told me that I could die, saying he didn't think I would, but he had to tell me that it was possible. We were not surprised, he has to tell people that, I was glad he just said it straight out and moved on.

Off to the floor that does the lab stuff. Met by two women: an older one with incredible sagging boobs which she used to prop on and a younger Hispanic one. The older was in charge (at least in her mind) though mainly focused on telling anyone who would listen (including us) that she had gotten the good deal that day as her husband was having to take their dog to the vet and especially liked to describe the dog's propensity to retch when placed in a car. Then she had fun telling me that I needed to wear a gown so that it would be easier for me to use the bed pan while having the leukophoresis done. I thought, with a max time on the machine of 3 hours...not on your life sweet cheeks. So I asked if it was ok for me to go to the bathroom, in case a specimen was needed, before the procedure started. She barely paid attention and said, 'Oh, sure.' On my return, she informed me that she needed a specimen. I just looked at her and told her that that would have to wait. The younger, who sort of seemed in training or just under the other's thumb, apologized for not having mentioned it prior to my bathroom trip, and said I could collect it after the process. Then, in bed and the older woman starts looking for veins (of which there are a zillion) on my left arm. She picks an odd one on the anterior aspect of my forearm, a strange place to choose to me, and starts scrubbing with some mumbling about placing it there so that I would be more free to move that arm, since the other could not be moved once that line was started. I'm thinking that would be more easily accomplished if she placed it in my hand, but whatever.... They have to use an 18 gauge needle so as not to damage the cells they are collecting and returning, and Brent, who was watching, reported that despite all her authority, she hit the vein she chose and proceeded to go right through it, then berated the vein for "blowing" (a term we medical people use to refer to a vein which pops when we try to run fluids through it...not when we poke a hole in it on the other side!!!) Anyhow, she gets the line on her second attempt. The younger lady starts the one on my right. Bossy woman objects to her first vein choice and I'm thinking, 'Go for the one you want, sister. Your advisor misses her picks!' But the younger lady had things going in one stick. Meanwhile, saggy booby lady, manages to berate nurse practitioners and doctors in rapid succession (both as folks not able to hold a candle to her skills and authority). When we gradually let her in on our professions, so as not to have her step any deeper into her pile, she is unfazed and says we were very quiet and not as demanding as those sorts usually are. I replied that I'd had lots of practice!

I had to be on the machine for 1 hour 15 minutes, which is pretty rapid. They will allow you to be on the machine for 3 hours, but check your sample of white cells at one hour to ascertain your rate of accrual. It's much like donating platelets. After getting rid of one of the IV's and giving them their specimen, we were off to the "research unit" where the medications are given.

We checked in at a reception desk and were given a little disk, beeper thing, like many restaurants use, which I found to be a bit disconcerting, but were called back within minutes. I discovered that since I am receiving vaccine injections as well as the anti-PD-1 infusion, I have to stay in a bed. I was looking forward to using the cushy recliner chairs...there are cubicles containing either a bed or recliner with a chair for a visitor. So, in the nurse comes for more vital signs and a tray, much like they use for jello shots in places that are much more fun and bouncy, filled with 6 carefully labeled syringes. Each contain 1 ml of what appears to be Elmer's glue.

She also brought an ice pack, for numbing purposes, that I am to apply to my leg. After she left, and I am freezing my leg, I tell Brent I don't want to use it, as it will only cause more tissue damage to freeze my skin. He just looks tired and tells me that I am much better at's a wham bam situation with definite results. I'm thinking....what's so about that?!!!! Anyhow, I acquiesce to the ice. Later, the injections are given, in not what I would describe as a painless process. They hurt like a booger! I mention to the nurse that it does seem a bit inhumane since we add lidocaine to Rocephin (an antibiotic that really burns) injections and Emla cream (a topical numbing agent) is available for these very situations. She grins and asks, 'Are you a nurse?' 'Yes, and this is crazy!' She tells me that such recommendations are regularly brought to the table by the nurses, but Dr. Weber says 'the patients tolerate the injections ok with the ice.' Well, yeah. What other option do they have?!!!!! I'm going to have to have a talk with that man. Brent and Dr. Carr will surely remember the "talk" I had with them when I was taking care of a baby post abdominal surgery who had only benadryl ordered for pain. Yes, that was changed!!!!! Anyway, shots done. IV med given over 30 minutes and followed by 30 minutes more of plain IV fluid infused behind it. Next, 1 hour of observation with nothing happening, except vital signs taken every 15 minutes for the duration. Then, we were free to leave.

I did fine. No spasms, no fevers, no rashes. I felt tired over the next couple of days but probably no more tired than I would have been had I made the trip all the way to Tampa in a snow storm and not been given any medicines at all. My thigh was really sore at the injection sites for several days and two of the sites became red, and warm, as well as particularly tender.

But it is done. My next treatment is on Jan 14 and they will take place every other Friday until March 11 after which I presume I will be re-scaned and we will go from there. I will not have to have the leukophoresis repeated until the last visit of this session on the 11th.

A little late as an update....but there you have it! c