Ok, so here we go again! I had a PET scan this past week and I didn't tell anyone except my family because frankly I didn't want anyone to ask me, "how did it go?" before I even heard the results (I had the test on a Friday and didn't get the results until Wednesday, so that's A LOT of time for me to over analyze!) Scan time just sucks. It's a depressing cycle of anxiety, sadness, and stress and I wanted to alleviate as much of that as possible.
And keeping it quiet seemed to work. In the past, in the days leading up to a PET scan I constantly think, "By this time next week I'll know" or "By this time tomorrow I'll know" and I freak out, making bargains with God like he's Santa Claus ("if it's a good scan, I'll never yell at Ross again about leaving his socks on the floor, I swear!). I usually cry, pray and hope that I'll get good news. This time I was a little more zen about it and didn't cry until I was actually in the room, waiting to have the test. Unfortunately I've had a lot of PET scans at a lot of different facilities and each one is different (I've changed each time I changed doctors and my current doctor just switched from NYU to Columbia). In one place I was allowed to read magazines as I waited (you drink a nasty substance that has to flow through your system for an hour before the test), in another facility there were no mags, but I could watch TV. The last test center I went to, no mags, no TV but a radio to listen to. This new test center...nothing! Just me and my thoughts alone in a quiet room. Seriously? I never want to be alone with me and my crazy thoughts. So I started to get a little emotional and then fell asleep (as I usually do!) and was totally groggy when it was time to go in the room with the machine. The fact that the process is different at each PET scan center bothers me the same way the TSA at the airport bothers me (in New York I can walk through a regular detector if I asked to, in Miami I had to get a pat down because I refused to walk through the new see-through-your-clothes machine and was denied access to walk through the regular detector when when I said it was for "medical reasons" Argh!). That's a long drawn out example, but basically nothing is consistent! And that's just at PET scan centers in NYC. When I look online at other cities, I also see that the process is different. I guess in my case it doesn't matter because across the board, each test has always shown disease present in my body.
But anyway, so the news was good, or "encouraging" as my doctor said. He came in with his usual friendliness and said that beautiful four letter word, "good" and my heart was able to climb back into my chest. Thank God! I told the nurse who also came in to take my blood pressure to wait a second because I was sure my BP and my heart rate were through the roof! The rest of the team came in with smiles on their faces as my doc explained the test.
It's all complicated and as I've learned these damn PET scans aren't a perfect test (clearly, given the difference I've seen in how the test is executed). You could get a false positive if you ate carbs before the test or worked out. You could also have very very small disease that isn't detected by the test. But what they usually look for is the size of the lymph nodes and whether they have grown or shrunk and the SUV (standard uptake value) level. Naturally, a higher level is usually considered bad, but when I asked what was "normal" SUV I was told it's different for everyone--so once again, nothings perfect. In my case with this recent scan, lymph nodes had decreased in size but the SUV levels had increased in some areas--however, my doctor feels that this is not necessarily a bad sign. The drug I am taking, Revlimid, increases your red blood cells and makes them better fighters against the bad cancer cells, so the theory is that growth of the red blood cells (aka the good cells) would show an increased level of SUV. This goes against what I always thought (high SUV= bad) but my doctor is incredibly smart and when he explained it, it made sense. However (here I go being a Debbie Downer), the true test will be my next PET scan because hopefully by then, the SUV levels will have decreased. Another encouraging fact is that my ESR ( a bloodtest used to determine how much inflammation is in the body) has decreased, and that is a great sign. I feel like a scientist with all this info (and I'm probably saying half of it wrong because I can only know so much or i start to go crazy)
Given my history of good PET scans when I first start a new treatment and then not-so-good scans afterwards, I'm not ready to pop champagne yet (incidentally I do have a bottle of champagne that my BFF Danielle gave me in Nov '09 when I thought I beat cancer the 1st time...it will be popped one day!) I do want to be positive though. The good thing is that I feel great! I almost feel as good as I did pre-diagnosis and my doctor said that is one of the most important factors. If I felt bad and was losing weight, he would be more concerned. But I'm feeling good and living an (almost) normal life. Case in point: Ross and I were walking down the street the other day when I saw the bus that I needed to take to get back to work and I ran after the bus to catch it before it drove off. Now, I normally don't run after buses I think people look silly running through the street and this past year I literally couldn't even think about running! But that day I needed to catch that bus or I would spend 20 minutes waiting for the next one, so I caught it and when I sat down, I texted Ross to tell him I was sorry I just ran off and didn't really say goodbye. He said no problem, because he remembers a time when I couldn't run, so it was fine. And I remember when I couldn't run either, so for once I didn't care if I looked silly because I could run! So for now I would say things are good. :)