The good news, and believe me the only good news of yesterday, is that my MRI with contrast has been completed to Dr. Stapleford’s requirements.
The DVD has been shipped to her at Emory via UPS overnight package. The bad news is that in our haste to get this project moving in SOME directions, other than sitting here twiddling my thumbs while this cancer is growing in my back suffered from an almost comical list of missteps and mistakes that almost shot me out of the MRI water yesterday and postponed it for another who knows how long.
The purpose of this blog is not ever to intentionally throw anyone under the bus. But, when you’re dealing with your own healthcare or your potential mortality, if you expect everything to run like a well-oiled machine and be assured you’ll get the correct test and that it will be done on time, you’ll likely be left completely disappointed.
First of all, the tumor in my spine has been proven to be growing at an alarming rate. We know that from the difference in CT scans from only 4 weeks apart over August and September of 2010. We got confirmation of the tumor on October 14, almost 30 days ago and if I had waiting on doctors to get a plan in place for us to get this cancer removed from my back, I promise you we wouldn’t yet be out of the gate. We might not have even shown up at the racetrack.
I have muscled my way into this process, with emails and phone calls, forcing conversations between doctors. One of the doctors refused to give me his cellphone number and would take sometimes a day a half to return phone calls. This one difficult-to-communicate-with physician not only left this cancer patient standing flat-footed and in pain but he also left three other highly-communicative doctors waiting for his input so that we could determine a course of care.
I’ve since been deemed worthy of having his cell phone number and I used it once today when it looked like our well-designed plan was going south. The plan, which I cobbled together with help from the good folks at the JBACC, was to spend eight hours getting IV hydration on Monday morning, four more hours of IV hydration on Tuesday doing the same thing and to sandwich an MRI with contrast into a carefully picked spot in the middle of that second day. I was calling most of the shots since Friday, because I was asking people to do things out of their comfort zone and I was definitely the only one of this group who was exhibiting any sense of urgency about my situation.
I made contact with Dr. Stapleford, who generously gave me some email time on her vacation. She promised to contact Drs. Vahjen and Alappan to let them know her requirements for the MRI scans. She did that before the end of last week. So far, so good. I started a barrage of emails with Dr. Vahjen and the occasional phone conversation with Dr. Alappan to try to determine whether I could have the MRI contrast, and if so under what conditions and in what dose.
Once I got all that information collected, I made the decision to have the scan done here, because my doctors here know my case, my situation with Strainer and my need for speed. So I communicated this plan to all my doctors. The plan was that I would be going to the JBACC early on Monday morning and be IV hydrated for 8 hours. I’d show back up on Tuesday morning for another 2-hour infusion and I was told that I’d be ready to be “placed on the table immediately,” for the MRI. Then after the MRI, I’d go back to the JBACC for another 2-hour infusion of fluids to help drive the gadolinium from my system.
I realized that my plan had slid off the rails the second I hit the registration desk at The Medical Center. “Do you have your orders?” said the very nice attendant. “What type of procedure will you be having today?” she continued. This is one of the cases in point that shows that when cancer is your diagnosis and you’re fearing for your life and at the least your way of life. You had better have done your research. The world of medicine is keeping these fabulous, well-meaning doctors from being able to hold your hand and walk you through the miles and miles of dirt road you’ve got to travel to either get a cure or some relief from your particular brand of cancer.
Here’s what happened yesterday: We were on a mission-critical, perfectly timed, optimum scan window of time that should have started as quickly as I could have made the trip from the JBACC to the MRI table at The Medical Center. When we got to registration, none of the doctors with which I had been working for the past two weeks had ordered the MRI. There was no record of any test for me that day. It wasn’t Dr. Vahjen’s job to do. His job was to supervise the MRI by making sure we got the images we need and not kill or maim me with the gadolinium contrast. It wasn’t Dr. Pippas’ job to do. He’s my overseer, my medical oncologist and the one who successfully set up my IV hydration plan which was executed perfectly. It wasn’t Dr. Alappan’s job. He is my nephrologist, the one who weighs in on all things related to Strainer and who can and can’t be done to assure my kidney remains healthy and functional.
So we sat in the registration waiting room for over 2 hours and I worked my cell phone to try to keep from more critical days of non-action toward my goal of zapping this tumor going by or even worse having to be re-done. The person whose job it was to have given us the order for the MRI was Dr. Stapleford, at Emory in Atlanta. I’m giving her a pass on this one, because I’m sure she’s not used to a patient being the one who is calling for an MRI order. Her first attempt at faxing the order didn’t work because the fax machine whose number we gave her was broken. We lost another half hour on the broken fax until someone walking by realized she had seen Jill and me sitting (well, I was pacing) in registration both on the way to and from her lunch hour and stopped by to see what surely must be going wrong.
I’m tired of the hand wringing. I’m sick of the discussions. We had a plan that if it had been executed well, would have had us on track to be at Emory by the end of this week getting ready for a next-week dose of stereotactic radiosurgery. We managed to keep it on the rails only because I took things into my own hands and bitched and cussed my way through it. I hope all the accolades and kind things I’ve said about my entire medical team has banked me enough positive credits to outweigh this last couple of days of FUBAR.
Let’s just hope that the person whose finger will be on the radiation trigger doesn’t read this blog!