Hey everyone, the last time we spoke, I was getting admitted into New York Presbyterian for a revision on my craniotomy wound that had a confirmed culture of Klebsiella oxytoca . At the last post all I knew is they were going to clean out my wound, culture my wound and skull and have a plastic surgeon close me up. I was also told my WBC and Platelets jumped since my labs on Friday, so my healing process was looking up.
After surgery, I woke up in pain. The one of my anesthesiologist was seriously a jerk and under-sedated me. I woke up screaming in pain and it took about an hour to get me out of pain and to stop screaming. Other than the crappy pain control I was given in surgery, my surgeon told my family no infection or abscess was seen on my skull or in my brain. He took cultures of my skull, which he said looked AMAZING and he had it de-germized in a brushing and soaking procedure.
I woke up from surgery attached to 3 antibiotics to address possible types of bacteria that could also be growing in my head - Metronidazole, Vancomycin, and Ceftazidime. It was a cocktail to address all antibiotics and also the most common contracted bacteria in hospitals and from surgeries... mostly staph, eColi, klebiesella, sepsis, cDiff, etc. The objective was to target the bacteria ASAP until we got the cultures back in 4-5days.
On Friday, I was told prematurely by some resident who never coordinated my discharged with Infectious Disease, whom were managing my cultures and making medication regimens. I left knowing that Klebiesella was the only bacteria and it was not found on my skull. My discharge was immediately cancelled. My Infectious Disease Doctor came to tell me that my cultures grew staff, the cultures of my skull top and bottom. Based on My MRI its a mild case of infection and is not osteomyelitis. He pretty much told me I had to start a new antibiotic for 24hours in the hospital that works well on both of the found bacteria and all types of Staph, including MRSA. He wanted to "cover all bases." He said its going to be 6 weeks as we were treating it as if it was Osteomyelitis due to the culture of the skull top and bottom having staph.
I was discharged Saturday with a giant box of IV antibiotics call TelFlaro, which addresses Staph, MRSA, and Klebs. Risks of this medication is development of C-Diff, so I have to take probiotics and also a cup of yogurt daily to prevent C-Diff. The side effects have been bearable, I mostly have had acid reflux, so I started to take Prilosec before my morning dose. The thing that stinks about acid reflux is all my favorite types of foods are hard to eat, I am a picky eater, and things that would help me gain weight - smoothies or ensure, do not coat my stomach so the acid reflux just gets worse. I am on day 4 of the Prilosec and notice some change - no acid coming into my mouth.
We were given a home nurse who met us at 7pm that Saturday to show us how to administer the antibiotic. She was to come 1x/week to change my catheter dressing in my port, draw my labs for my Doctors to check for signs of infection and cultures to test my blood for the bacteria.
Kyle and I ultimately have become a nurse team at 7a, 3p, and 11p administering my medication for at most 6 weeks. It has been pretty exhausting due to the early wakeup and late sleep hours for both of us. We have been taking a lot of naps.
In the midst of all of this, we have been working on the wedding. I have been crawling back into cardio - I walked 2miles one day and rode my road bike indoors for 20min yesterday. I was encouraged by my oncologist to get back to moving and doing cardio & yoga, but avoid my gym and possibly cancel it due to the risk of bacterial infection in gyms is pretty high.
Why did my doctor want me to move? My mood has been unstable and I have been angry. How much more can cancer take from me after I was just regaining my "hobbies" after the post craniotomy, radiation and holiday craziness. Also after the steroidal mania and constant positivity it gave me an then the sadness & anger coming off the steroids, I was pretty hopeful for 2017 to get my life back together an just focus on the wedding. I was also still angry at the hair loss I had from radiation. So I had the week after christmas to get back to driving, walking and I was doing yoga. I had the port surgery, which caused mild pain and then the head infection reared its ugly head. So I never got back into being Caitlin, but back into being the girl held prisoner in a hospital and visiting nurse due to cancer. Since my thinking was clearly negative and I wasn't even trying to restructure it or reality tested, I ended up pissed and sad that I could never do what I like again. I miss jogging, lifting, doing vinyasa yoga, rock climbing, hiking, and being outside. These are all things that I turn to that brighten my mood. I also stopped reading because radiation was causing mind farts. I love reading and usually read 2 books a month. I have not read since the first week of December. I felt like a shell of a person & the only thing I believed I had to hold onto was the company of friends and family & Kyle. Other than that I was angry that cancer was stealing my physical capabilities, my ability to focus on reading, my freedom from doctors, ability to move on beyond chemo, and yet again I am stuck at home with a tube in my body and felt like a prisoner.
I do have to say my thinking has improved since I haven't had to go to NYC more than 1x this week. I also feel that walking on Wednesday and riding my bike helped ground me and make me feel like I am just not a sick girl.
So where does chemotherapy come into this mess? I had to take a four week chemotherapy break to ensure this time that my wound has healed and to make sure its not open with low WBC and puts me at risk for bacterial infection. I restart Carboplatin & Gemzar (my chemos now) on 2/7/16. Also my radiation oncologist, surgeon, infectious disease doctor, and oncologist want me to get a follow up brain MRI to 1. look for infection and 2. have another MRI at 8-12 weeks post radiation to have a better idea as to how radiation worked.
I am scared to have a break from chemo. I have only been off of an anti-cancer drug for days. I have been on constant treatment since January 2011. Treatment has side effects, but it gives me the assurance that I am doing something to keep cancer under control in my body. Luckily I have a slow growing cancer and my doctor says my Brain is still healing from radiation, which takes 2-3months to work. She also assured me a 4 week break is not that bad, but we have to focus on healing my wound, kicking the bacterias butt, and making sure this does not keep happening. Her insurance will be giving me Neupogen shots with every chemotherapy. This should help avoid any more strange infections where the germs we all carry will attack me and infect me.
So here is the update. The antibiotic schedule makes it hard to go out and do much. It also makes me tired, because I am working on 6hours of sleep daily. I need 8-9 to be awake. I am spending a lot of time with Kyle, who is out of work until the IV drugs stop and I am back on chemotherapy & we get my 8 week brain MRI results back.
On top of that, the life insurance I paid into since 2014 & was told by my old head of HR and the broker for TransAmerica that even though I had cancer, if I signed up in 1/2014, my condition would not prevent me from collecting my payments if I ever needed money for care or treatment. It is a big chunk of money. This company has denied my claim 2x as the current contract with my company excludes preexisting conditions for coverage. This is the only documentation I found and its what TransAmerica is working with. My bacterial infection is not a condition covered by this plan. I am hoping my current HR department of two awesome women, whom have worked with me since 2015 on my medical issues & even broke down STD, LTD, and cobra etc for me before I left in October.
That being said the money from that company I was hoping to use to pay medical bills, I may be denied because of no documentation in the paperwork we were given to allow prior diagnosis to be covered. I essentially paid close to 3,000 dollars into a plan I was told would help me & now I wasted money. (BREATHE) OK done. I worry about this a lot. I have been told to stop worrying about this. This is my last rant on it. This is why I have been ever so grateful for all donations paid into my GoFund me. The amount of care I also received in November has increased the debt I need to pay off - ambulance rides and doctors in hospitals who do not take my plan... so I now owe 2,000 dollars from 2016 and 2,000 dollars for 2017 due to out of network expenses. I have adjusted the needed donation money & I hope you guys can continue to share it. GoFundMe has helped us pay for the cost of gas, my copays, the 25 dollar ezpass cost for each car ride, 40 dollars in parking and if I can train the 30 dollars per train ride into NYC. Having cancer is quite pricey.
Ok I am off to get my lymphedema glove & sleeve for the year & to spend some time with Kyle.
So here is that BLOG I promised.
No comments:
Post a Comment