To update everyone I have 10days left of this antibiotic. It is seriously a countdown, but it is coupled with fear, anxiety and panic that the infection will return, I will have surgery again and I will lose my skull flap/bone due to the infection not responding to the last surgery and the 6 weeks of IV antibiotics. I honestly just want to be on my chemotherapy and move beyond this infection nightmare and get my feelings in check, but it is still hard because ALL OF THIS is fresh.
I also have been having one specific nightmare quite often. No nightmares of the cancer growing in my brain, but being infected forever and never being able to stay or get on a chemo to kill the cancer in my body...then things get bad and I wake up in a panic. Usually its due to me feeling a tumor growing out of my ribs due to being on antibiotics and not chemotherapy.
This my friends is a sheer symptom of PTSD. The emergence of the Brain Tumor had me go through so many feelings of loss - sadness, anger, denial, acceptance, bargaining. This issue was hard to recognize from November to December because my emotions were clouded by Steroids, which made me manic, hyper positive and super talkative, so I seemed psychologically stable to some because I was "happy" and "moving."
As you all know, December ended with the hair loss and the infection, which put me into this state of fear, anxiety, anger and stasis. I was depressed, I lost 1/4 of my hair mostly the front left and spots on the left side. These areas can only be hidden by a hat or I look very much like Gollum from LOR or Riff Raff from Rocky Horror. I mean I love these movies, but it is not an ideal look for a wedding in 40days....
WHICH ONE SHALL I BE??? WHAT A PRETTY BRIDE???
Anyways I need humor to stay a float. My hair is not this bad. I got a custom real hair wig to fix the problem and will be getting a fake hair wig temporarily to hide this mess until something grows in and I can get a hair cut that is less... well one of the above.
After I came home post surgery and I honestly feel like I was on autopilot and would range between moments of tears out of left field, misdirected anger, silence, and then flat emotions. As a therapist, I knew this was a reaction to trauma. I was not giving up, but I was afraid I would get no chance to hold onto hope again and get better to be better and be myself again... I was afraid (and still am) that I will always be the sick girl and will be in and out of the hospital forever now thanks to the brain tumor and infection. I was afraid to do anything and I was afraid I would never get out of the worst cancer experience I ever had... It finally felt horrible, never ending and quite horrible.
I am having better days. These are the days where I actually do my makeup. Unfortunately, I am still partially apathetic and have avoided some other self care items like waxing my eye brows or getting 2month old gels off of my nails. I seriously need an eyebrow wax, but my apathy and fear of infection has led me with caterpillar brows. Maybe I could donate to my cancer sisters who lost all of theirs...but that truly is a lie, I just need a push to get myself to get these scary things taken care of. I also need a manicure and pedicure, but I just keep picking my gel polish off from NYE...yep.
The makeup was a big step. I love doing makeup and getting dressed up. I started to help Kyle clean, which to some may be a pain, but I actually enjoy cleaning my house as it brings me pride & I am a clean freak. I have been taking some small bike rides on my road bike inside, I do it but not as much as I wish I did or could. I will do yoga on random times, but not daily which I would prefer. Honestly I just either have been too tired or just an apathetic person to put care into this daily, but I am trying more than I did a week ago and more than a week prior to that. I also am not used to taking small steps, but giant leaps & I have the patience of a flea.
To be truthful this past weekend there were a good amount rough days when I am anxious and hyper vigilant. I restarted chemotherapy on Tuesday with ALL of the other mental and physical stuff going on and here is how my Thursday to Saturday was a fun filled party in the Kennedy-Masterson household:
You know cancer has caused you PTSD when for 3 days this is what happened in your head and life:
1. You avoid reading your brain MRI result for 10days despite being told it was "excellent"....I of course imagined them lying to me, had that damn nightmare again and had to force myself to read it a bit ago, which was accompanied with a panic attack. I jread the brain MRI, which is showing tumors shrinking and noted that all skin infection is gone and i have mucus in my sinuses...so yep things are normal there & that is AMAZING, but I am not celebrating because I keep waiting for a shoe to drop on my head or more or less inside of it.
2. I had a spitting stitch (looks like a pimple) near my craniotomy wound Friday (which is still healing near my scar). I assumed it is automatically an infection, so Saturday was fun with not just one panic attack, but a whole day and nights worth I had to sedate myself & call my surgeon's urgent line. He and I discussed the skin and issue and he explained to me that if it were infected it would be pus and not clear yellow sebum or stitch popping out & can take days to heal up the hole the pop caused. I am still paranoid its an infection despite labs, exams and scans show no signs of infection but my mind thinks it is, so it must be true. Now I am having my oncologist look at it, because she knows I AM CRAZY.
2. I had a spitting stitch (looks like a pimple) near my craniotomy wound Friday (which is still healing near my scar). I assumed it is automatically an infection, so Saturday was fun with not just one panic attack, but a whole day and nights worth I had to sedate myself & call my surgeon's urgent line. He and I discussed the skin and issue and he explained to me that if it were infected it would be pus and not clear yellow sebum or stitch popping out & can take days to heal up the hole the pop caused. I am still paranoid its an infection despite labs, exams and scans show no signs of infection but my mind thinks it is, so it must be true. Now I am having my oncologist look at it, because she knows I AM CRAZY.
The "best" parts of my weekend were all due to restarting Chemo & its side effects that my brain farts clouded over. These side effects my crazy head took to the extreme worst case scenarios and made two urgent calls to my doctor team.
1. Thursday was a day full of loose stools, which I automatically assumed was c-diff in my mind, so I called my doctor in a panic and i ended up getting a poop sample done & I got my first stool sample ever done. This was totally a life goal. Funny part is that two days later after finally taking 2 immodium it all went away and things resumed to normal. Yep I do not have c-diff... or I would live in our bathroom or be in the ER by now.
2. I also threw up most of Thursday from not taking my anti-nausea medication after chemotherapy and assumed i had a new brain tumor that somehow grew in two days after my good MRI. I called my oncologist and she told me to take Zoran for nausea, which left once I swallowed the first pill.
2. I also threw up most of Thursday from not taking my anti-nausea medication after chemotherapy and assumed i had a new brain tumor that somehow grew in two days after my good MRI. I called my oncologist and she told me to take Zoran for nausea, which left once I swallowed the first pill.
Moments like these his is when I wonder if I should be hospitalized not for a infection, surgery or cancer but for being a fucking nut job... Thank god I have been going to therapy for 7yrs.
I also would hire a new internal voice to hammer in my head that when a doctor says things are good I need to take their word.
thanks cancer, you have made a crazy person into a certifiable nut job....
