DFCI is an amazing place, home to some of the world's best cancer researchers, oncologists, nurses, and staff. Known for its concern for its patients, you'd think this organization must operate with a smooth efficiency that would be envied the world over, right? Well, think again. As with most large entities, DFCI is afflicted with the common maladay, Snafu, or, as you all know, Situation Normal, All F***ed Up. Let me regale you with our experiences yesterday at this Mecca of cancer treatment, this supposed model of effective and efficient care.
It started as soon as we arrived. After checking in before our scheduled time of 11:00 am, we were told that the blood draw unit was backed up today. Well, that has certainly happened before. No big deal. I only had to wait half an hour for my blood draw and IV port insertion. However, that process didn't really go too well. The nurse wanted to work on a vein lower in my forearm today, so she fiddled around for a while sticking it and maneuvering it around trying to get it to work. I don't know why she didn't use the big vein near my elbow like they usually do. Last week the nurse said she could shoot that one from across the room. Anyway, after a lot of painful wiggling around of the needle, she finally got the blood she wanted, but she had go back and refill some of the tubes, which screwed up the whole process, so some of the samples had to retaken later in the day. But that was just the beginning.
As usual, my appointment with Dr. Richardson for 12:30 came and went without incident. Gretchen went to the cafeteria to bring a sandwich back to the sitting area so we wouldn't starve while we continued to wait. We finally met with Dr. Paba Prada and Muriel Gannon around 1:30 or 2:00...I kind of gave up keeping track of time by then. I wasn't too thrilled with the pathology report I got from my serum protein electrophoresis from last week. The immunofixation report showed "a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantified". Claudia and Muriel were encouraging and said it didn't mean anything, but after everything I've been through, the last thing I wanted to see was an M-spike, however faint! Of course, Dr. Richardson was nowhere to be found, so they sent me over to infusion to get my first dose of Velcade, with the plan that he would catch up with me there.
OK, so by now it's about 3:00, and I get hooked up to get another blood draw and hydration before my push of Velcade. However, a problem arises. The Velcade order is rejected by the pharmacy because it came through saying this is day 0, when it is actually day 1. Paba Prada and Richardson have to resubmit the order for the pharmacy to act on it. However, neither of them is anywhere to be found. Physical searches are fruitless. Pagers go unanswered. They have both disappeared into Limbo. Eventually it is determined that they are in consultation with a patient. My first thought is to envy whoever it is who is able to command this much of Dr. Richardson's time. I rarely get more than 3 or 4 minutes with him at my appointments. Then I realize that the patient may have serious issues and needs that time, as I did on my first visit.
My infusion nurse, Heather, is trying her best to get this fixed. At long last, the order is corrected and sent back to the pharmacy. Richardson finally shows up, shakes my hand, tells me how good I look, and then, before he rushes out of the room, I ask him about the pathology report. He says that after a stem cell transplant, there are often lots of little blips in the blood tests as the new stem cells start to take hold, and that this is a normal reading and I shouldn't be concerned about it. OK, that makes me feel better. Then off he goes...whoosh!
By now it's after 4:00, and the pharmacy can't say how long it will be until the Velcade is available, so Gretchen and I decide to go over to BWH Floor 6b to deliver a thank you note and gift to the nurses who were so good to me during my stem cell transplant there. You know, it's frustrating for these nurses. They spend weeks getting to know patients as they go through the difficult process of a stem cell transplant, and then the patients leave and they never hear from them again. They very rarely get any closure on the patients they worked so hard on and got to know so well. It was nice to visit with them. They were thrilled to see us and were glad to hear that I am doing so well. Just a little consideration can really go a long way, and these nurses deserve it so much. I wish more patients would give them the courtesy of a followup, just to say thank you and let them know how they are doing.
Anyway, we get back to the infusion floor about 4:45, just in time to find out that the Velcade cannot be made available today! Apparently, the sponsor of the clinical trial failed to notify the pharmacy that this dose was needed today, so they can't fulfill it. Not that they don't have plenty of Velcade available, mind you. It's just that they can't use what they have to fill this prescription unless the proper paperwork is filled out (probably in triplicate or quaduplicate), and it's too late in the day for anyone to cross the i's and dot the t's. Nothing left to do now but to go home. Of course it is now the peak of rush hour.
We decide to have dinner at a local restaurant so we can chill out a little bit and avoid the rush-hour traffic home. However, because of the weather, the rush hour(s) is (are) extended, so we get the traffic anyway. C'est la vie. So ends our eventful day at Dana Farber.
Now the schedule that we have so carefully crafted with Muriel is down the poop chute. She will call me today to try to reschedule all of this. I hope it doesn't upset some of the travel plans we have already made, but it is what it is. Some days are just like that.