An Update from New York Presbryterian - Cornell's Neurosurgery Floor

Clearly according to this post title you know where I am. We met with my neurosurgeon today and learned the culture of my wound puss was positive for eColi. Also that my surgeon did not like that I had one puffy spot with puss despite being on Keflex. The Keflex did clean up a lot of the infection but he did not want to sit with the infection much longer due to my compromised immune system from chemotherapy and radiation.

Ultimately my lack of immune system has made my body not be capable of fighting off bacteria all us humans are walking around with everyday. We all have random bacteria that affect people worse when they have no immun system. I have no white blood cells and they are not fighting off infection.

That being said my surgeon decided he wanted to do surgery on my wound to clean out the infection. What does that entail? Well he had to reopen my crainiotomy scarline, clean out the skin, remove the skull plate that was removed during the removal of my brain tumor, check the skull for infection, then disinfect the skull if it does not appear infected by the eye and then wash out my brain and my scalp with antibacterial stuff. A culture will be done of my skull front and back, skin wound and top of my skin to determine if the eColi culture was accurate and determine what type of bacteria my head was growing.

If my skull is infected, well that's just bad. I will have a dent in my head, would be off of chemo for 2-3 weeks, be on antibiotics and would have to wait 3-4months until my skull or a metal plate can go into my skull to reform my already deformed head. I would also need a month break from chemo possibly to make sure my counts are Ok for surgery. THIS IS THE WORST that could happen and would transcend a bunch of other bad shiT. Too many pauses in chemo = more room for cancer to grow. Also if my skull is messed up on April 1, we probably are gonna have to move our wedding and lose money and get married at a courthouse.

I just wanna marry Kyle. When this cancer was under control, I had very little fear of cancer coming and ruining a wedding I wanted with him, something we deserve...a day to celebrate us and not deal with my cancer and normal day to day issues that are always conplicated by this shitty cancer.

BEST CASE SCENARIO is (and this is what my surgeon and oncologist agreed on) that we have the surgery to clean out the wound, find out the bacteria and get me on an antibiotic, & then restart my Carbo/Gemzar in two weeks. Also my wound will be closed by a plastic surgeon this time to make sure the wound is clean and sewed up right. The antibiotic can be oral or IV. If it's IV I will get some dosing at the hospital and then will get a visiting nurse to come to our house and give me the IV chemo at home for whatever schedule is prescribed by the Infectious Disease Department. I Meet with Infectious Disease tomorrow and they will work with my surgeon and oncologist for an aftercare plan for my infection and cancer.

So yea that's this weeks shitty news...

Good news is my brain MRI is stable and showing signs of regression. No growth no new brain tumors. Also my tumor markers are dropping within one round of this chemo, so we can assume based on my labs and brain scan that this combo of chemotherapy drugs is working. This is why I worry that this infection will create a huge gap in a treatment that was working and it was and will get me to and past the wedding we have been planning for 9mo.

A year ago I did not want a real wedding out of fear that cancer would get in the way. I used how and positive thinking and coaching from my oncologist and therapist to explore what I would do if cancer wasn't here- I would have a normal wedding, at a venue, in a dress that is a ridiculous party...

But here am living with the fear that not cancer but complications due to cancer will lead to me not getting married and not getting back on treatment that was helping me. I am worried a bacterial infection will lead me with an infected skull and a hole in my head.

BTW I was never told this could happen. Apparently it's common in immune compromised people. Not my family nor myself or my oncologist was really told this or we would have taken bigger preventive measures. So yea I am pretty angry at that...but I was told this is not something I did but not having WBC didn't help.

So here I am at NYP for 4-5days...I can't have many visitors bc I am sharing my room with people who are sicker and older than me. For now Kyle is here and I can have 1 family member in here most of the time. Unless I get my own room after surgery for now I am sharing a room with four people. The hospitals are overcrowded and I also do not know if I can deal mentally with too many people or voices again. I am not doing well emotionally through this and neither is Kyle. We would love emotional support but would hope to limit visitors to 1-2 at a time for now. This is a lot for our little family to take in now.

All I want is to marry Kyle, maybe have a kid with a surrogate and have our cat baby, arya with us. I already miss home and hate this place. I need to be here, but I wish this would all go away and I can go home with my family back to planning our wedding & happy that the drama from November is gone.

Now here we are and we are back and the flashbacks from November are bothering me bad. I have had panic attacks on and off for five days. I am tense and my mood is less hopeful than I usually am. I am holding onto hope that my cancer is retreating. I am holding onto hope that I don't have a fever which possibly means that this infection is contained to my skin (considering Keflex cleared a lot up).  Keflex would not work on eColi according to google & my doctor but we need the culture and surgical facts before I come to a conclusion.

Please pray for us. Kyle also may have to leave work. We would appreciate any support emotionally or even sharing our GoFundMe . Thanks and if u wanna visit text or Pm me and we can work something out. I don't know when we will be home. I or Kyle will update more when we know what happened post surgery and my antibiotic and chemotherapy schedule going forward.

I have to keep going forward. I need to ground myself.