1. No premeds were ordered. I am thankful my attention was made to focus on my medication preparation and I asked why the steroids and Aloxi went in so fast...hour wait finally got premeds and crisis 1 averted
2. I have become a Medicare patient and have been lucky to experience the awesome crap show my clients always dealt with is...Perscription coverage and coverage of the 20% Medicare does not cover (bet you didn’t know that!). I paid for a new horizon medical called a medigap plan and a prescription plan called Part D of Medicare...there are like 8 parts of Medicare you could be eligible for. Regular Medicare only covers Hospitals and Doctors. Apparently an oral chemotherapy is NOT covered by my prescription plan when I was sold the plan and told all I needed was a form filled out and a preauth... Horizon had no clue what they were talking about...
Anyways so 1 of my 4 Cancer medications is a speciality drug that gets mailed to my home. I spent my whole chemo session explaining this shit show to three nurses, Caremark, my mother, my husband, Horizon and finally the person who fixed this (after the Sloan nurses contacted my doctor) was a financial rep at Sloan. After another draining call to Horizon who said that I am now officially enrolled in Medicare Part A&B, Medigap (Part C that covers 20%), & a Prescription Plan that will back date and pay for my treatment since May 1, 2018.
So YAY right? Not yay
3. Sloan calls to tell me that this Medigap Plan and Prescription Plan do not cover my Specialty drug, but Medicare part B does cover 80% & I have to pay 2,000+ of what isn’t covered. After I was explaining that I do not have 2grand every month to spare and would have saved more if I kept Cobra until December, Sloan offered me a grant to pay for my Xeloda and will have it shipped from their pharmacy in under 12hours to my home. They said that once I get my Medigap Card they are going to resubmit the claim for this drug and try to get it covered under Chemo since that is how Part B of Medicare is apparently covering this drug
So I am tired and am probably using the worst grammar in this post. Sorry guys it’s a rush post and is too long to do a quick Facebook update.
On top of this we did laundry, groceries, small errand for my moms wedding, finally ate food and my visiting nurse came...
I did not get a nice shower until 730pm.
I did not get to relax after a day of Chemo, tears bc I felt like Horizon lied to me, and anger that sick people get screwed daily from the insurance world...I finally sat down at 8pm.
I am exhausted
I have a headache from the stress
I am grateful that this all worked out. My gram always said that and she is right. The emotional and exhausting journey to get to that “worked out” point is sometimes too hard to avoid and calm down and turn my face to god. I am just glad that my angels in heaven worked with God and had Sloan Kettering help me again.
Anyways in good news my recent brain MRI showed 9 spots compared to 20. 8 of them have been shrinking and one is stable. No radiation and we continue the systemic therapy which continues to work on my brain. I am also off of all oxygen and my blood oxygen is back up to 96-98%. I also joined a Liverstronv Fitness program for cancer patients who need to regain strength in treatment. I started it two weeks ago and have gone four times and feel very proud of myself. Tomorrow is day 5. I have not had a body CT scan but my doctors say the labs are good and my clinical presentation continue to improve. Most likely we may scan if my labs go into the Danger ZONE or if I ask for one in June for my follow up at Sloan in NYC.
In the meantime I will have three more doses of this chemo and two more cycles will be finished before I see my doctor again. I am praying my miracle continues to work. I just want this to be a good summer. Not like last summer when I had no energy to leave my home alone for more than an hour. Not like the summer prior where I spent the last half of it throwing up and brewing a brain tumor. I want to go in a pool. I want to get some time in the sun. I want to go to the beach.
Ideally I would like to go into the water but .... that wound from September is still here and is finally closing it’s about 2x1cm now, but as long as it’s there I can lay out and put my legs into water. A shower shield will not withstand the Atlantic Ocean or a pool...but I want to have this thing healed. Also the belly is still shrinking. I now look like a shinny girl who likes to drink beer. It shrinks every week and my clothes finally fit better. I finally don’t look like a egg person at 98lbs with 20lbs of tumor or fluid in my belly & body. I am finally 119lbs if real mass, look human, don’t look pregnant with dying cells and not the baby that people would and probably did assume if they didn’t see my bald ass head...crap I looked sick in Sept.
Anyways.... thank you god for the miracle of health. Thank you for making today work out in the end. Thank you for shrinking my belly. Thank you for letting me have another year of flowers sun and sand. Thank you for letting this chemo work as long as it can and extend my life as long as this cancer will allow. I know one day this will kill me. That sucks. It just sucks. I am not ready to die and God knows it. I have a few more things I would like to get done here for God and my family before I am sick enough to go.
