"Your illness does not define you, your strength and courage does." - Unknown
These past few days have been up and down. I was lucky enough to spend time with amazing family every day since last Friday. I had a graduation party on Saturday where I was able to see and talk with those who I may see once a year at Christmas, I put my cooking skills to the test for a belated Father's day dinner on Sunday, and then was able to have my family right by my side as I had my long awaited MRI (two weeks is a long time right now!) of my spine followed by an appointment to hear the results. All of this sounds like a great time, and it was, but in between all of the excitement is down time where my mind starts to load up on anxious thoughts and tough conversations open up between myself and others.
Some of this information will be repetitive (again), but I think that it is necessary. I have met with countless doctors over the past month that provide so much incredible information to myself and my family. I have been doing my best to stay organized with a binder I have created to write notes, store business cards & receipts, maintain my medical and Rx history, and anything else important that requires documentation and organization. I actually want to give myself a pat on the back, I think I have been doing a pretty good job with this! Anyway, with this surplus of information filling my healing brain accompanied by the fact that no one, especially me is perfect, I may have left out details when posting or catching up with friends and family, or possibly not providing the 'right' type of details necessary for others to fully understand my situation. In my mind I understand what's going on, I ask what I think are the right questions, I perform what I think is the right research, but who is on the receiving end of this information 100% of the time aside from me? No one, which may be the issue.
Let me start with this topic: Cancer. This is a word with strong emotional ties. I feel that the minute you tell someone that you have cancer, they automatically jump to the worst case prognosis in their head, they think you're going to lose your hair if on chemo, become weak and ill, don't like to talk about the illness, that you are now defined by the cancer, and that you fight until either you or cancer wins the battle. Yes, some of this may be true depending on each individual situation, but I want to focus on my battle.
Yes, based on my research and speaking with multiple doctors, my illness is classified as cancer, however, that absolutely does not define me. If you are more comfortable with thinking of my illness as a brain tumor rather than brain cancer due to the negative connotation, that is completely appropriate as well. It is a tumor. It is in my brain. It is a brain cancer. HOWEVER, it is important to remember that tumors that start in the brain (primary brain tumors) rarely spread to other areas in the body. Again, primary brain tumors may spread to other areas of the brain or spine but like previously stated, rather spread to other areas of the body. Check this helpful website out for more information: http://www.cancer.gov/types/brain/patient/adult-brain-treatment-pdq In my opinion, this is a reason some doctors don't like to use the term 'cancer' when dealing with malignant brain tumors. According to the same site as above, cancer is a term for diseases in which abnormal cells divide without control and can invade nearby tissues. It is my goal to provide all who read this with an understanding of the difference between cancer of the brain/central nervous system and the many other types of cancer that exist. All are different and unique in their own way and shouldn't be looped together under one umbrella, only for the purpose of the definition regarding the nature of the cells.
With that said, no special treatment is being requested. I know what my condition is, I know what I should/should not be doing (drinking, driving (not in that order & not together), being alone at home without a babysitter, running, biking, eating junk food) and I know that everyone cares, but it's exhausting to constantly tell everyone that I am a normal human being who has little to no restrictions. The only time I will have restrictions is if my platelet counts are low during chemo, at which point I am smart enough to make the decision to avoid crowded areas, sick people, and overdoing it. While I appreciate how nice everyone is, please understand that you have a life too that you are allowed to complain about to ME, feel shitty about things going on and vocalize them to ME, complain about a headache to ME. You are a human being. I am not stripping you of your right to talk about your life so please do not think you need to shelter your communication around me and only discuss positive things that may not offend me. This is my real life and that is your real life. Nothing is always sunshine and rainbows, bring me your craziness, I will enjoy hearing about it and taking my mind off what's going on in Tiffany's world...trust me.
I appreciate everyone and everything that is being said and given to me so please do not let this post offend you, that is not my intention. My intention is to be raw and real. To move away from "poor Tiffany" or "I don't know how long she will be around so I'm going to be nice." Even if no one thinks those, this is what it looks like on my end and even if you think it may be comforting, it's almost scary and not a good feeling. Maybe I'm overreacting and not recognizing the good, honest intentions? This is quite possible, I am a chronic over-reactor and over-thinker, so if that's the case I apologize, but I also don't think it hurts to share my feelings.
I was going to share my MRI results and treatment plans but I think I will save that for a separate post in the next day or so. I don't want to distract from the information shared here because to me, this is important. Going forward, I will also be trying my best to post in black & white, leave no room for invalid interpretation of my situation. I don't want conclusions to be jumped to or for assumptions to be made. I want everyone who is taking their time to read my words to be properly informed!
Until next time!