Tuesday, July 15, 2014

Never Mind Doc

Everything about my infusion last Monday, July 7th, went smoothly.  I saw the PA, and we discussed my two concerns. One, my acid reflux is back full force. It really can make my days miserable. She said I could up the dose of the current over-the-counter remedy that I have been taking. The statistics show that 9% of patients on TDM1 experience reflux. Since I have had this in the past, I can't say for sure my treatment is causing this, but I did not have this problem with the other treatment. On the 25th, I have an appointment with a gastroenterologist. Hopefully, he will be able to prescribe something to help relieve it. Second, I had her check two little red spots on my neck and one on my chest. Those spots were worrying me because, believe it or not, breast cancer can metastasize to the skin. The more I read the more I find this disease has no boundaries. The verdict for the red spots was not cancer, whew! What they are is still unclear. For now I am not going to worry about them.

On Thursday, I met a new oncologist. This doctor was to be a new member of my team, one that would be able to order the drugs necessary for my treatments in Wilmington. While speaking with him, I asked how often he does brain scans. His answer made me remember my understanding that insurance companies, not the doctor, make the decisions about what tests I can have and what drugs I can take. Most tests are only allowed when there are symptoms -- unless it is an approved age-related screening like a colonoscopy or a mammogram. Once you have been diagnosed with cancer it seems to me screenings for metastases should be mandatory, but they are not. That may be because of the desire to limit radiation exposure, or perhaps there just isn't enough money available from the insurance company to pay for additional diagnostics. Since my disease, the HER 2 neu kind, tends to metastasize to the brain more often than other types, it seems only logical to have brain scans at least yearly whether or not there are symptoms. Treating a small tumor usually has a more favorable outcome for length of survival than does treating a large or numerous tumors. But, no, finding cancer when it is small is not the goal, so no brain scan for me right now. Sure, I could make up some symptoms, but I don't want to do that.

After three hours of mostly waiting for my blood tests, CT scan, MUGA scan, and next infusion to be scheduled, I finally felt that I had accomplished the goal of changing treatments to a facility closer to home.

On Friday that all changed. The nurse from the new oncologist's office called and said, "Your insurance is terminating on August 1st. If your insurance is to continue under the same plan or if you change insurance companies, we will need your deductible paid in full prior to any treatments." Our insurance is being renewed -- thankfully -- but and it is a big BUT, our deductible is $10,000! Nope, that amount of money doesn't exist in any of my bank accounts right now. The hospital in Chapel Hill has never asked for a lump sum payment of our deductible. Instead, they set-up a payment plan which is allowing us to manage the huge amount of debt we incur each year I live. The final words the woman said to me before ending our phone call haunts me still. I said to her, "I guess I will have to continue treatments in Chapel Hill." She said, ". . . if they will take you back." Good grief, I am at the mercy of so many people.

Today is Tuesday, one week and one day after my infusion. I spoke with the nurse navigator in Chapel Hill yesterday, and my treatments can continue as usual. It is disappointing after the many weeks it has taken to try to be treated closer to home to have it all fall apart because of our inability to pay for the switch. At least, the up-side is my daughter will be attending UNC-Chapel Hill in the fall which means I will be able to see her every time I have an appointment. I am happy about that.

Next appointment, scans will be reviewed. NERVOUS


  1. Ummm... would you like to give me the phone number and name of the lady you talked with in Wilmington. I would truly like to give that no-customer-service-bitch a piece of my mind! How can people like that be in the positions they are in!

    Also...I am THRILLED you are going back to Chapel Hill. It might be a drive...but the care you are getting there definitely can't be found in Wilmington.

    When's your next appointment? I'll be praying.

  2. Sandie, I am certain she wouldn't want to hear from you.
    My next appointment is Monday the 28th as long as all is stable on the scan I had today. I hate waiting to find out what my next three months will be like -- so stressful.