Anywho, I finished radiation the first of March. I will go into more detail about that experience in my next post (which I swear I will post this week since its basically already written) but I finished radiation doing okay. The majority of it wasn't too bad but by the end I had severe burns in my esophagus which made it hard to eat and talk and my skin was very irritated and itchy. Luckily everything healed up a few weeks after my last treatment so by the end of March I was feeling back to myself. I still get tired easier and its harder to catch my breath but overall I can't complain too much and everyday it gets better.
Two weeks ago I went in to get a PET Scan to determine the results of the radiation. Of course I was feeling pretty anxious about it for the following week leading up to my appointment to get my results. People would ask me how I was doing and I'd smile and say okay when in reality I just wanted to throw up all over them. I felt like the girl from Pitch Perfect ha. I was just so nervous. I've been nervous about things before in my life but going through Cancer is a completely different sense of nerves. In the past I'd be nervous about a test or presentation or speech but all of those things I had some slight control over. I knew how well I was going to do before they even started and if I did bad there was something to blame, that I didnt study or practice enough. With waiting for these results I have no idea what is going to happen or any hints of which way its going to go and there is nothing I can do to make them go the way I want. It is completely up in the air. The doctors gave a lot of encouragement saying the radiation usually wipes it out. But you don't want to let your mind go all the way positive just in case and in my case I am glad I didnt.
Last week I received the results and unfortunately did not hear what I was hoping for. They are still seeing something on my PET scan results. It is in the same spot as it was before the radiation but this time its slightly bigger. My oncologist can not tell if it is more cancer or some sort of scarring or effect of the radiation. This obviously was not what I wanted to hear. This is not common, it happens obviously, but not often for hodgkins lymphoma patients. We could wait a few more months and do another scan to see what it looks like then but because the spot is bigger my oncologist does not feel comfortable waiting. She wants to find out what it is as soon as we can so if it is still cancer we can start taking the next steps to get rid of it for good. HOPEFULLY though it is not.
Now I will have a CT Biopsy (surgery) where they will go into my chest and take out a little piece of the spot and figure out what it is. I have to get more scans and then will meet with the surgeons to find out more information about the actual procedure. From there we will set the date of the surgery. My oncologist believes they will go in through my back or side to access my chest due to where my spot is. I will then have to be in the hospital for a few days to recover and have a chest tube. If it is not cancer then there will be a major WOOHOO partay and I will try and get back to normal life. Although after 1.5 years of this Im not sure what normal is anymore. If it is cancer then I will try a new drug and/or have a harder round of chemo and a stem cell transplant... many prayers its just scarring.
So unfortunately that is where we are at. Not what I was hoping to share but c'est la vie. The first day of finding out the news was pretty rough. It is just so frustrating and scary and so many why questions that no one has the answers for. And then I struggle with feeling sorry for myself and then feeling guilty because there are still others way worse off than me. I think that is one of the hardest things about this experience for me, balancing my feelings of sadness, hopefulness, and guilt.
In good news though the PET scan did not pick up any other spots!! That is very good. So there is a fair chance this could just be stuff from radiation. We just wont know for a little bit longer. But one thing you learn going through this whether you want to or not is patience. So I will patiently wait for the results. I have now wrapped my head around the new situation and am ready to take on whatever comes!
As always thank you so very much for your continued support, thoughts, and prayers through all of this. Its been one heck of a journey but it would be so much harder if I did not have such a great support system! I will keep you updated as I find out more information AND I promise to do it in a timely fashion :)
Thoughts and prayers Amber. Stay strong!!!
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