We are “supposed” to be in South Carolina right now, slowly making our way to Florida for a few months. There are several traveling friends we planned to see, and we were looking forward to some warm days and interesting exploring. Life has other plans for us these next few months, unfortunately.
Call it what you will …. Snag. Detour. Roadblock. Speedbump. Minor inconvenience. What it actually is … an unexpected diagnosis of lymphoma for me (Karen).
We are still in the early stages of learning exactly what type of lymphoma it is (there are over 70 different kinds), but it has definitely put a kibosh on our travel plans.
It started with a pain in my left side, at the bottom of my rib cage, sometime in early November. As many know (much to their chagrin!), I have a habit of self-diagnosing myself. Since our health insurance has been the “major medical, high deductible” type for many years, we have opted to stay away from doctors unless it was absolutely needed. We have been relatively healthy, so I treated this pain no differently than other blips in the past. I researched, came up with my own diagnosis, and proceeded with natural supplements like I normally do. But the pain didn’t go away. Some days it was difficult to take a deep breath; other days it felt like it was going away. It came, it almost went, but then came back. Finally, the week before Christmas, I decided to call my doctor about it. We had a Telemed appointment—my first ever. I had to wait in the virtual “waiting room” for 20 minutes, which was unexpected, but when my doctor finally came online, I had her full attention.
I described my pain and symptoms and shared with her what I thought it might be. She listened then patiently explained that it couldn’t be what I thought it was because my symptoms would be different. She actually thought it might have something to do with the lining of my lung because of the times when I would get a piercing pain when trying to take a deep, deep breath (which did not happen every time, just on certain days). She ordered a lung x-ray and an abdominal ultrasound for the next morning (December 23), and her nurse called me with the results that afternoon. This was a red flag for me because it seemed rather quick to get a call back from the doctor’s office. There appeared to be some masses on my spleen, and a CT scan was being ordered for me for more information. My CT scan was scheduled for December 27.
Over Christmas weekend, I had horrific pain in my back. If I was standing or sitting, I was fine. But the act of standing or sitting was excruciating. And sleeping was next to impossible. I could not roll over to any side without crying out in pain.
On Monday, December 27, I had the CT scan. On Tuesday, I tried to wait patiently to hear from the doctor’s office. Then I gave in and called four times. The first two times (late morning and early afternoon), I left a message. The third time I chose to get to a “live” person and left a message with her. This particular doctor’s office closes at 7:00pm, so I made my fourth attempt at 6:30pm and was told that they had received my CT scan results but they were in “blue” and the nurse could not go over them with me. I was told the doctor would call me on Wednesday.
Of course, Wednesday morning, while I was taking a shower, I heard my phone ring. I had a feeling it was the doctor’s office so, yes, I ran through the Airstream naked and dripping wet to answer it! (Carl was at work. DANG…) They were calling to set up a midday Telemed appointment with the doctor.
It was at this appointment that Dr. Vaidya informed me I had lesions on my spleen (“innumerable lesions”) that point to some type of lymphoma, and she referred me to a hematologist. I was also scheduled to go into her office the next morning for bloodwork.
Side note: The bloodwork I had for my physical at the beginning of November before my pain started was relatively normal—nothing to flag anything suspicious. And the results of my second set of blood tests showed nothing of great significance either.
While there for my bloodwork, I mentioned my back pain to Michelle, the doctor’s nurse, and asked if it could be related to what was found on the CT scan. When looking at the radiologist’s conclusions, it was evident that, yes, the back pain was being caused by a couple of enlarged lymph nodes that might have caused a “pathologic fracture” in the lumbar region.
I met with the hematologist on January 6, and a PET scan has been scheduled for January 15 to determine the best location for a needle biopsy.
Another snag that occurred … The night before my appointment with the hematologist, I went online to just check on my health insurance and to make sure the hematologist was “in network.” At first, I had trouble logging into my Blue Cross Blue Shield account, and I called web support to get it straightened out. Once I logged in, I was confronted with a large TERMINATED notification. What? I was holding my current insurance card in my hand! I called customer service at BCBS and learned that, in fact, they had received two “orders” from healthcare.gov in early December—one to continue my health insurance into 2022 and the other to terminate it. After a couple of calls, being forwarded to the billing department, and having a conference call with healthcare.gov and BCBS, it was determined that there was a miscommunication with the “orders.” My health insurance is active, and it is just a matter of time for BCBS to get their system updated. The sooner the better because my PET scan appointment can be cancelled if my patient navigator, Mindy, doesn’t get the pre-authorization I need in time for it.
That’s where we are right now. Waiting for BCBS to get their system updated. Waiting for the PET scan. Waiting for the biopsy. Waiting for treatment. Waiting, waiting, waiting.
Carl is keeping his part-time job at Lowes Home Improvement to stay busy. We will continue mooch docking at my friend’s house in Garner for the time being (not sure how I’ll ever repay her for her kindness!). I’m going to continue building my BookLayoutPro.com business, maybe start writing a book, finish my paint-by-numbers paintings (I have two), and start acting like a tourist in my hometown. I’m itching to take pictures again and explore new places and/or new things.
I decided to share this through my blog because we are being asked if we are on our way to Florida. I thought it would be a good way to keep people who are interested informed, and it is a way of journaling my experience.
It is also a reminder to enjoy living in the moment. I hope you will give yourself a gift of adventure at least once a month—a new place to explore, a short (or long) hike, a bike ride, a state or national park, or simply dipping your feet in water (lake, river, ocean). Go looking for a covered bridge or set your eyes on a nearby waterfall.
I am very hopeful and expect a positive outcome. Loving, healing energy is welcome, as are positive affirmations. Keep your energetic vibration HIGH, and live your life with some adventure sprinkled in!
With love… Karen and Carl