Ok I have pulled a serious "Where's Waldo" over here. I had a lot of information to blog about, but have been keeping myself so busy that I have not made anytime to update my blog. So lets rehash where I have been & what treatment has been like etc...
I SPENT THE LAST 2 MONTHS LIVING ...
I GOT MARRIED & I TRAVELED
1. The Wedding Happened
After having a Crainiotomy 6 months before our wedding, followed by radiation and chemotherapy, then a head wound infection with 6 weeks of IV antibiotics 3x/day & progression of disease which required a chemotherapy change... We got married. It was the best day of my life second to the day I met Kyle. I wanted to share some of the pictures we have from the wedding... we have 1,160 pictures...which I will be sharing online on Facebook shortly.
2. We went to MEXICO on our Honeymoon. We stayed at the Grand Velas resort, which was nothing but beautiful, relaxing, had amazing food & drink, services and accommodations for my dumb Gluten Allergy. Kyle and I had an amazing time... our pale skin turned a darker shade of Beige, but we enjoys 4 days pool and beach side and a couples massage. It was just what we needed after the 6 most stressful months of our lives. Here are some pictures of our amazing time and the view from the pool & room.
3. I went to Florida to visit one of my Breast Cancer Breasties who also has Metastatic Disease... I have known my friend for 7yrs, we were diagnosed the same year and our cancers both suck and have been quite troublesome this year for the first time ever. My friend had a rough March & April and she had moved to her parents in Florida...I found a super cheap ticket and then packed my bag to go visit her for 4 days. I went to chemotherapy with her, which was the first time I was the friend and not the patient at chemotherapy. We spent the rest of our time laying in her parents pool, going on walks ... which we got lost on the first time lol, meeting her amazing parents and aunt, eating food, and relaxing... and spending 4 days with a girlfriend laughing about things not related to cancer and also had emotional moments where we did talk cancer. She gives me so much hope and I love when she says "We are not going anywhere and we will see a cure." Her hope gives me hope and I hope mine gives her hope. She has a liver biopsy today so please keep her in your daily thoughts and prayers. I love her so much.
here is us enjoying life... getting tan, laughing and looking beautiful like always.
👻NOW FOR THE TREATMENT UPDATES 👻
1. After returning from Mexico, I started the SRS (radiation) treatments to the spots they found on my MRI in April. I had to go for four sessions. The first two were longer sessions as they got 2 spots on day one, 1 spot on day two and 1/3 of a lesion, and the last two sessions each covered 1/3 of a lesion. The 4th spot was split up due to a safety concern about the spot being near a previously radiated spot to avoid necrosis or bleeding to the dead tumor and also to avoid potentially radiating the CSF fluid output spot to avoid leakage of the CSF. I was upset about adding two more days, but honestly I am glad I do not have a bleeding or leaking brain. Radiation is done. I see my Neurosurgeon on July 3rd after my 8 week MRI. I am praying that radiation continues to remain affective on my brain tumors.
2. I am still on Halaven. I have finished 3 cycles of Halaven. My markers from Cycle 1 to Cycle 2 day 7 had dropped from the 800s to 200. We learned this when we were boarding our flight to Mexico. It was excellent news. The hair thinning, bone pain, joint pain, restless leg syndrome and crippling fatigue was well worth it if in 1.5 cycles the chemo was THAT effective.
my life is never that simple
3. We come back from Mexico and I start my 3rd cycle of Halaven and I am full of hope. How could I not be with those awesome labs, my clavicle nodes kept getting smaller according to my doctor, and I was done with brain radiation. They drew my tumor markers again that day to try to get me back onto getting my labs drawn on DAY 1 of every cycle.
I never look at my tumor markers in my patient portal. I used to, but it would turn me into a psycho mess and sometimes I could not speak to my doctor for hours or even a day if she wasn't in the state and at a research conference. In 2015, I decided to never read my tumor markers at home and I would wait until my next doctor's visit to discuss.
So on DAY 8 I asked about my tumor markers, I was told "they are confusing us now, so we are drawing them again today and sending you for a scan." My APN gave my mom the labs as we were getting my port accessed for blood draws before chemotherapy. My mom said "oh they are not that bad." I went and looked at them and the numbers my APN showed my mom were uhm BAD. My cea which dropped to 200 was 350 and my ca 15.3 which also was 200 was 900 something. I couldn't stand, I fell in the lab room and cried. My APN was gone, I haven't spoken to my doctor about this and I was surrounded by 2 chemotherapy nurses, the lab technician & my mother. I could not handle anymore bad news. My friend, whom I looked at as my cancer mother and she also attended treatment with me at Cornell, passed that morning. I did not want any bad news coming across my path as I was barely holding myself together after her death. I was already thinking "ALL MY FRIENDS ARE DYING AND WHEN AM I NEXT." I kept thinking of the amazing tumor marker drop and that radiation was all done to keep me from ruminating on that negative thought and to stay hopeful that this treatment was working.
My chemo nurse ran to get my doctor & the lab technician prayed over me and hugged me so tight...they truly care at my doctors office. My mom and I were brought back to meet with my doctor whom explained that the lab change also confused her and she is not sure what spiked it. She has been working with Halaven since it was in early trials and she reported that "it can do weird things to labs, so I am making sure we have you get a scan before I see you next to see what is going on inside as you are due for a scan anyways." She also did a physical exam and said the nodes keep shrinking and she said she doesn't want to assume or draw conclusions before my scan, but if the nodes are shrinking thats a good sign - "cancer shrinks and grows together, just some spots are larger than others or have more cancer cells inside."
I felt better after talking with her, but was still tearful and sad. I asked my APN to call me with my tumor markers and she agreed.
It has been 14days and I never got a phone call from anyone at my doctors office regarding my tumor markers. I was able to distract myself by staying busy, going to florida and doing yoga.
Today it has been hard not to think about it. I keep thinking of the CT Scan...the possibility that after 3 rounds of my 3rd cancer drug in a year, I will have progression again, and that I have never had a good CT scan in a long time that did not warrant bone radiation or a need for a pleurx catheter...Today I am working on barely any sleep. Halaven has given me Restless Leg Syndrome so I was up at least 4x at night due to RLS and hot flashes (which seriously went away after I stopped Xeloda).
Amongst this new cancer drama, I have been spending at least 1-2 days a week calling Horizon regarding surgeries, treatments and wig coverage issues. Horizon has actually been pretty easy to deal with, but it is still annoying because I have gotten no letters resolving the 3 grand port surgery that Horizon has refused to pay for twice, paying for my wig when my policy states 100% coverage yet they paid me 19% of my wig cost which was 8grand due to me needing a custom wig after the craniotomy as normal wigs cause my head to have pain and headaches from the elastic bands and the sizing does not fit my head well.
THE ICING ON THE CAKE is the Second Crainiotomy surgery where I was given two doctors - a plastic surgeon and a infectious disease doctor, who do not take my insurance. I had no choice and only the Infectious Disease doctor told my family that he was out of network. I was slammed with a 15,000 bill for my Plastic Surgeon's "closing of my wound." Horizon paid $2,500, so I gave Cornell that payment & explained that I did not know he was out of network or I would have possibly refused his services or asked for another doctor. Alas those were not the cards I was dealt and Cornell told me to not pay the rest of the bill as they will "speak with Dr. Spectre regarding my lack of employment and finances to pay the rest of the bill." I asked them to also call Horizon, but they paid what they felt an out of network doctor should be paid, yet they should have paid 80% of the cost and paid 17% of the bill. Now my plastic surgeon wants 6 grand out of my pocket. I had to agree to a monthly payment plan before they contact a collections company and also bar me from getting any treatment at Cornell. I cannot afford 6 extra grand for a surgery that my insurance should be paying. Now, I have to call Cornell to try and appeal the surgery to get more coverage. If they won't call then I will be appealing to Horizon myself, which in the past for me has never worked out so well unless the doctor also appealed with me & my plastic surgeon does not do claims or appeals for us...only the hospital billing. I am keeping my fingers crossed that the hospital billing department will work with me on the appeal despite me asking for a payment plan for the ridiculous charge my greedy plastic surgeon wants from a cancer patient.
SO YET AGAIN ANOTHER CANCER PATIENT WITH A CADILLAC INSURANCE PLAN IS GETTING SCREWED UP AND DOWN DO TO GREED AND DO TO INSURANCES NOW NOT WANTING TO BUDGE AND TAKE ADVANTAGE OF THE SICK WHO ACTUALLY USE THEIR PLANS
I am also going on Long Term Disability on June 1 and have left CPC for who knows how long... I guess my new job is going to be arguing with Cornell Billing and Horizon. I cannot afford a lawyer to do this for me nor am I paying this bill without trying to get someone AKA Horizon to pay it.
I also updated my GO FUND ME PAGE... which we are running out of funds after paying down past medical bills. NOW we have new ones... if you feel like it please share my blog or go fund me page, it would be very helpful to Kyle & Myself and our families.