Drama and more waiting

Most of the assessment is done. It's kind of hard to believe.



A year-long venture. More if you count my pre-planning. Being done is only part of the battle. The waiting now will be among the hardest mental things I'll do. Everyone says how hard it is to wait for the call. I've always been an anticipator. I worry before others worry. That's why I think I will worry most about if it is "time" now.



When my friend K was dying after contracting a severe strain of cepacia, I cried all the time. I remember in particular on Sunday November 9th my sister and I went to a backstreet boys concert. I cried at one particular song, ironically titled "you can let go". The next day, K died. My first close person ever to die. I was tearless. I spoke to his/our friends on the phone completely stoic. Not because it hadn't hit me yet, but because it had hit me way earlier. I wonder if listing will go this way for me. I have a month to wait to hear. Until then, I will tell my story of the drama of assessment. Here goes:



So as anticipated, the early mornings were the worst thing about assessment. I enjoyed our hotel, however.. which was a nice suprise at a time like this. The oxygen company, who initially claimed it would cost money to drop me off a concentrator, did so for free after some prompting and nothing at all went wrong with that. The worst test was the MUGA, as all my facebook friends pre-warned, mostly because it involved exercising while laying down. Also, though, because it was soooo long. I swear from start to finish that test was 2 hours AND involved 2 injections. This test proved to be the source of a lot of problems as the week progressed. Before I move on, and since the topic of this blog is radiation, I should also mention that when I went for my chest x-ray at 9:45am after my bloodwork on the first day, I was told I was "early" for my CT (12:30pm). When I corrected them, they proceeded to do the CT and chest xray back to back at 10am. That made me uncomfortable.... moving along....



I had noticed in the information book that the Bone density scan warns that it cannot be done within a week of a test involving radioactive dye. The dye test (VQ scan) was slated right after the bone density test, so that was ok, but the MUGA was the day before. The MUGA does not involve dye but does involve a radioactive tracer. I made sure to ask about this with the transplant coordinator when I arrived on the first day. She reassured me that it was fine, as I expected knowing that all of the pre-transplant CF'ers do this same regime. That final test day came, and when I was filling out the consent form for the bone density scan, it asked me 3 "important" questions, and one was a variation of the radiation question, this time no mention of the word "dye". I spoke with the bone density technician to be sure, and she was not completely secure with me doing the test but said that 90% of the radioactive tracer should be gone by this point (24 hours later) and that she could "test" scan me on the machine before completing the test. I thought about it and agreed, and the pre-scan apparently showed no remaining radiation.



Fast-forward to 3 hours later and the VQ scan. Of course this is the longest hallway ever too. We arrive and I walk in, and the guy says "this will be a very short test, about 7 mins". I reply that that is wonderful because the MUGA scan I had the day before was forever. At this point he gets a horrified look on his face and says "you can't do this the day after that test!". I'm basically trying to form words at this point as I try to make sense of so much miscommunication and disagreement between supposed medical professionals. He walks me to the machine, and shows me a screen, apparently doing what the bone density woman had done that morning. His screen lights up like a Christmas tree with my torso, and I almost burst into tears at the realization that I can see the radiation and have no idea what the right thing to do is. He and his sidekick in VQ scanning both reassure me that I'll probably be fine from the earlier bone density scan, and that no, I cannot do this test right now because of the radiation still inside me. They may have said something about risks towards my heart as well. I march to my husband and we march back upstairs to speak with the coordinator, 2 hours before we're supposed to be there for the final meeting with the dietitian.

Upstairs, the secretary gives me a disgruntled look as she contacts the receptionist in charge of the coordinators business.. this woman, after 25 minutes of us sitting waiting (with me worrying and saying things like "I'm supposed to trust these people to save my life?" under my breath) comes and says "they were wrong, it wouldve been fine, but we'll reschedule it for next week". I'm sure it was fine... after all the hundreds who have gone before me I certainly can't be the first to discover such an apparently huge problem. All I know is it left a horrible taste in my mouth, has me visiting two separate hospitals on a snowy day this week, and that if I ever get cancer I'm always going to think about the assessment where no one seemed to be on the same page.