The Results Are In … NOT!

For those who read my previous blog, Life Throws Us a Curveball, you might recall that I was in a holding pattern with insurance, a PET scan, and a biopsy. Well, the wait is still not over.

I have had my PET scan, which showed several different lit-up areas, the largest being around my spleen. There were a couple of bone spots and a few clusters of lymph nodes that are a cause for concern, and it is from one of the clusters that my needle biopsy is to be performed.

The lit-up areas of a PET scan show where trouble spots are and help doctors determine the best place to perform a biopsy if one is needed. Because of the role of the spleen (basically, a blood filter, among many other blood-related tasks), they try to avoid performing biopsies on it. Any wrong move, even infinitesimally small, can cause internal bleeding. Therefore, it has been determined that a lymph node at the base of the right side of my neck will be the biopsy point. Bonus: I’ll look like I have a hickey for a few days. I gotta get some action somewhere!

My needle biopsy has been scheduled for 2/3/22. It would have been scheduled sooner, but things with my insurance have not been completely resolved. So I requested that the biopsy be performed February 1 or later, and I was assured by my hematologist that waiting an additional week would not be detrimental to my health.

I asked my hematologist, based on my PET scan and what he knows so far, what he is expecting from the biopsy. He is expecting some type of “low-grade” lymphoma requiring about 4-6 months of “mild” chemotherapy. I did not ask what he meant by “mild” chemotherapy, but I did ask about radiation and immunotherapy. He didn’t respond to the radiation question, and his response to the immunotherapy question was along the lines of “one could argue that chemotherapy is a form of immunotherapy.” Let’s just say that I will be switching to a different hematologist after the biopsy.

The switch to a different hematologist has actually been in the works since I was referred to one. I was initially referred to Dr. Kamineni at Johnston Hematology and Oncology in Clayton, but she was on vacation until January 10. They set up my initial hematology appointment at their sister office in Smithfield, and it was from there that my PET scan and biopsy were recommended and scheduled. My biopsy will be performed in Clayton, and my follow up appointment and treatment will be with Dr. Kamineni in Clayton.

As for my insurance woes … Well, they continue for the time being. Right now, my healthcare.gov account shows that a new plan with a lower deductible and out-of-pocket will begin 2/1/22. [My original plan that was chosen before I knew I had a problem has a very high deductible and was supposed to be effective 1/1/22.] My Blue Cross Blue Shield (BCBS) account now shows that my original, high-deductible plan is in force with an effective date of 1/14/22. BCBS should soon (meaning this week) be updating their system to reflect what is active with healthcare.gov. Frankly, I’m afraid to call BCBS to check on the status. I have a feeling I will muck things up royally! So I wait.

In the meantime, I have self-paid for my initial hematologist appointment (which was more like a meet and greet and recommendation for PET scan and biopsy), and I am to self-pay for the PET scan. My self-pay cost for the initial appointment totaled $483.00 (regularly $805.00). The PET scan cost leaves us with some questions. My initial self-pay estimate was $4,689.60. Of course, this didn’t include the “nuclear medicine” they have to pump into your veins for areas to light up in the scan. And it didn’t include the finger-prick test to check my glucose levels before they injected me with the nuclear medicine. My final self-pay bill for the PET scan is $5,480.40. Wait for it, though … the fun(?) has just begun. Carl did some digging—he did some serious sleuthing to find it—and found the cost of the scan on the Johnston Memorial Hospital’s website: Their retail (and “Max”) price for a PET scan is $7,816.00. But then they have a “Min” price of $1,209.14, and the BCBS Blue Home price is $2,604.29. I understand that the BCBS price is negotiated. I am just trying to understand why there is a minimum price, and why my self-pay price is greater than both the Min and the BCBS prices. I am currently trying to negotiate my cost down (post PET scan, that is), so we will see how that goes. [I’m sharing these costs because we are learning as we go. People have enough stress just dealing with their serious health conditions. Medical and pharmaceutical costs and insurance seem to go out of their way to keep stress levels high. No bueno!]

Bottom line: I will know exactly what ails me after the needle biopsy, and my treatment will begin. And my fingers are crossed that BCBS and healthcare.gov will finally come to a meeting of the minds on my insurance.

Other than that, you might be wondering how I am doing.

Physically, I have back pain most likely caused by a pathological fracture. Sometimes ibuprofen helps; sometimes it doesn’t. Sometimes it is tolerable; sometimes it isn’t.

Spiritually, I am great. I know I am at one with All That Is, and I am consciously drawing to me that which has already been created. And it is all good.

Mentally and emotionally … Hang on! It is a roller coaster ride! Most days, I feel positive and confident. Other days, my brain is completely scattered, and I have a hard time coming to grips with things. I often feel trapped—by my health, by the weather, by my wanderlust, by my living circumstances, by my reliance on others when I’d rather they rely on me, by my inadequacies … Shall I go on?

I am eternally grateful for of the positive energy and affirmations, loving and healing energy, virtual hugs, well wishes and prayers, and gifts that are being sent to me. I graciously accept them and know they are contributing to my health and wellbeing.

Thank you for taking the time to think of me and to read about my experience. Everyone’s journey is their own, but I hope my sharing helps someone—whether it just satisfies curiosity, gives one peace of mind, or helps someone in his or her own journey.

Stay well, enjoy your day, and engage in some small adventure!