Last week on my Friday I actually got to spend the day having fun instead of at doctors or in the ER. My mom and I went to lunch with Trisha Johnson and what a joy that was. Trisha had a grade three tumor. I guess it is as close to mine as you can get without it being the scary…grade four. She had her tumor removed by Dr. Smith. We have not heard one bad thing said about Dr. Smith. Everyone who has had him…absolutely loves him. He is my emergency doctor if I have to have surgery again. It is just nice to hear one more good thing about our Dr. Smith. She also had Brachman and Shapiro..well still does! She sees Shapiro every two months to check her scans. She had other oncologists there (ones we were considering going to) and she did not like them. She told us that Brachman and Shapiro were her absolute favorites and that my team was the best. She reassured me that I have the best care. She went through 16 months of temodar and knows every medicine. She too hates Dilantin and is actually on another med now for seizures. She knows exactly what it is like to look at the scans with anxiety running through you. She knows how it is to look at a scan and see ¼ of your brain just GONE! Ah I cannot remember everything she helped us with but I will try to list a few.
Chemo Brain (doesn’t go away) she said it is a real thing. I of course believed her and went to Google it to see what it really does! Here are a few words from Mayo:
“Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, cognitive changes or cognitive dysfunction.”
and here are a few words from the cancer help website
“The phrase ‘chemo brain’ has come to be used by cancer survivors to describe changes in memory attention, concentration, and abilities to perform various mental tasks that are associated with receiving chemotherapy treatments for cancer.”
Great…just what I need…an added disability to focus and remember things…! :)
Sensitivity to loud noise and motion (will go away) I have struggles going mainly to Nathan’s basketball games. I always get sick after and don’t feel well. Trisha told me that it is most likely this sensitivity…nothing will stop me from going to his games. Being a little more sick is definitely worth it.
Extreme tiredness (semi go away) She said that there were days that she had to just stay in her PJs. She told me the importance of naps and the effect they have on your brain. She still takes a nap every day. It is just all the medicine pounding my body.
Appetite (coming back!) I will eat like a pig again! Yay
Fatigue (go away) I will be normal again…wait! What is normal…I seriously am afraid that I forgot what normal is.
Okay there were a ton more but I can’t remember…maybe my mom can come in and add a few things later.
I got to ask her all about everything! Twas wonderful. I asked her about the white fuzz still surrounding my scans. I got to ask her about decadron and hear her hate for that as well. I learned what she did with her radiation mask and figured that maybe a baseball bat wasn’t such a bad idea after all! I asked her about what she ate and how she handled the whole thing. We pretty much went from start to finish with her whole process. She told me how I can tease Shapiro and everything! I can’t remember much more but I do remember how extremely grateful to have that time with her. Just to see someone happy and healthy and full of hair with a smile on their face means so much to me.
I actually found a decadron while cleaning the other day. I destroyed it! I crushed it to fine dust that I will never have to see ever again. I really don’t know if I have ever disliked something as much as I dislike decadron. They did up my Dilantin…which I don’t like but can handle. I had to take 600 mg last night…talk about being tired! I am surprised I am still walking and alive! That stuff literally knocks you out. Of course I have a sweet husband who vacuumed the house for me and then went to the grocery store…then went to two banks, staples and then back home to watch food network with me. I am the luckiest girl in the world. Will he still do this when I am better??? Do I want to get better?? Ha!
I do want to get better…more than anything else. I want to run and have fun and not feel any limitations. I don’t want to want something…and then tell myself no. I hate telling myself no. I hate telling myself that I am sick and can’t do everything. I want to be super woman so bad! I want to be able to go and never stop! Trisha said I can’t be superwoman right now…I need to rest and let my body have the chance to heal.
I will be super woman…just give me a year or two!
My mom said I need to get a picture with my hair...it is growing back so fast!