I know it's been too long since I last updated this blog. The past two months have been an emotional roller coaster.
After my first post-treatment PET scan, I had a relatively easy four weeks of waiting. I was so confident that the activity showing up in the PET was inflammation and that the second PET would show little to no activity that I didn't mentally prepare for any other news. On August 2, I received that unexpected news:
After spending my required hour incubating in radioactive glucose and inching my way through the scanner, we happily walked into the oncology clinic--totally unaware that my doctors were stewing over a very confusing scan result. I sat in the paper-covered chair. Jason sat to my left, probably thinking about where we would have our celebration lunch.
After the oncology fellow asked the standard questions and pulled my information up on the computer, he left the room to get my oncology team. I knew something was wrong when Jason went slightly pale as he squinted at the computer screen across the room. At that point, the rest of the meeting became a blur.
The doctors entered the room and explained that my PET scan showed a slight increase in activity compared to my first post-treatment scan. The radiologist also noted that the area of activity appeared as if it had increased in size. My doctors were worried that I still had residual lymphoma and might need radiation.
Some background: In this clinical trial, only 2 out of 48 people needed radiation. For the first time in this entire ordeal, I thought "why me." Honestly, not once did those two little words cross my mind when I was diagnosed back in February, or as I lost my hair from chemo, or as I said goodbye to my period for potentially the last time. I just never questioned why I was one of the unlucky few to get lymphoma.
As I write this post, I'm still not sure why I jumped to the feelings of "why me." I guess I was so confident in this treatment plan after my near-perfect mid-treatment scan that I never accounted for the possibility that I might need radiation.
The doctors scheduled a CT scan for the following week to determine if the area with PET activity showed any abnormal tissues. I'm not going to lie, those six days of waiting were really hard. At one point, I just felt like I completely lost hope. Radiation can be very successful, but as you start checking off the boxes of treatment options, it gets a lot scarier.
When I reached that low point, I called my coordinating nurse. I know that a lot of people would just want to hear someone say, "oh, I'm sure it's nothing," but I needed to hear exactly what the doctors were thinking. I really appreciate how honest she was. She explained that the doctors were leaning towards residual lymphoma, but that we definitely couldn't jump to conclusions without seeing the CT scan. She also reassured me that--if it came to it--the NIH radiation oncology team is amazing, and that I'd be in good hands. She also gave my information to the on-call doctor who later called me and spent an hour on the phone going over every possible outcome of the scans and what it would mean for my treatment. Any doctors reading this, there is no way to put into words how much it means to the patient when you spend that kind of time helping us.
After talking to my nurse and doctor, I did feel a lot better. This time, I was mentally prepared for any bad news from the CT scan. THANKFULLY, the CT scan showed no growth or abnormal tissues in the area. The doctor even pulled up my scan to show me exactly what he was looking at and measuring. They decided to wait another 4 weeks to see what would happen in the PET scan over time. Believe me, it's much much easier to wait four weeks after a good scan than 4 days after a bad one!
Fast forward the four weeks: My third post-treatment PET scan still showed activity, although this time it hadn't increased. Since my CT scan a few weeks earlier looked good, and there was no increase in the PET activity, the doctors decided to wait another 4 weeks and repeat the PET and CT scans.
Here I am, waiting for my fourth post-treatment set of scans on October 4th. Jason and I have attempted to get back into the swing of things. We've been attending family events and exploring Washington DC with Zachary. I've started writing again for work, and my hair is even starting to grow back. But even though life is slowly returning to something of a normal, it's completely different than before my diagnosis. I live life in four week increments at the moment, because after four weeks, I have no clue if I'll be cancer free or not.
So, here's to four weeks of enjoying life to the fullest!
