The past nine months have been some of the worst of my life. Around the beginning of the year, I began noticing that the annoying headache I had wasn’t going away, no matter what I tried. My usual go-to over-the-counter meds and natural practices for headaches weren’t working. As someone who has battled with migraines since I was in my teens, I like to think I know more than the average person about headaches and treatment. I can easily tell a tension headache from a migraine from a run-of-the-mill headache.
The pain I was experiencing was none of those. I was dealing with an unknown quantity and wasn’t sure how to approach it.
Self-Care? What’s That?!
At that time, my partner was having some health issues of his own. When we learned he had renal cell carcinoma, I put my own needs on hold to focus on his care. Thankfully, though indeed he was given a very scary diagnosis, his cancer was contained and limited to a very large tumor on one of his kidneys – it was literally the size of a football. He was very lucky, though (relatively speaking) in that they were able to remove the affected kidney the tumor was attached to, and he didn’t need any further treatment – no meds, no radiation, no chemo—a considerable relief.
His surgery was performed in early March 2023, but because of the size of his tumor, they weren’t able to remove it via laparoscopic surgery as originally planned and he ended up with an eight-inch incision in his abdomen, which increased his recovery time exponentially. During his recovery, I had been his caregiver and was working seventy-hour weeks as well, so there was little time for my own self-care. As soon as he was back on his feet and back to work in May, I was finally able to address
my own health issues.
The Hoop-Jumping
Most of us are all too familiar with the often excruciatingly slow process of being diagnosed through traditional healthcare, and that turned out to be the case for me here. The first provider I saw wanted to treat it as a headache caused by allergies. I didn’t believe allergies were the source, but I trusted the instincts of the provider.
But my own instincts were right – allergies were not the cause. The provider was stumped and wanted to refer me to an otolaryngologist or ear, nose, and throat (ENT) doctor. After three weeks and multiple calls and messages from me, I still hadn’t heard from scheduling for the appointment. I ended up switching healthcare systems entirely and finding a new care provider. This, of course, started the whole process again from scratch.
The next provider had a more likely diagnosis – trigeminal neuralgia. Common in women my age and aligning with some of my symptoms, I thought we were really onto something. Finally! This provider also referred me to an ENT, and thankfully, I was able to get an ENT appointment…more than a month later, on June 20. Meanwhile, I was prescribed a nerve-blocker with some seriously scary potential side effects. And since it didn’t work for me anyway, I stopped taking it pretty quickly.
My ENT appointment arrived, with frustrating results. Whatever was going on with me, it was not trigeminal neuralgia. So finally, after months of appointments and medications and consultations, an MRI is finally ordered, and the soonest they can get me in is another month, on July 22.
The MRI Findings
By that time, I was eager for the procedure, as it is so incredibly difficult to live with a constant headache (literally constant – it hasn’t gone away since I became aware of it at the beginning of the year; there are merely moments of better and worse). A Saturday early morning brain MRI sounded like a trip to Hawaii to me at that point.
The results were scarier than I anticipated. There were two small lesions in my parietal lobe, and, in the words of the radiologist: “Metastatic disease is not excluded.” Those are some of the most frightening words I’ve ever read.
Metastatic disease. Brain mets. Cancer spreading from another part of my body to my brain. If you look at the prognosis of this disease, you can imagine how terrified I was. And as far as I was aware, I didn’t even have cancer. How could this be?
So we scheduled another brain MRI, this one specifically tumor-focused, to verify the findings of the first. I suppose the silver lining is that things were finally moving at a faster pace due to the serious nature of the findings from the initial MRI.
The second MRI not only confirmed the first but actually discovered three more lesions—a total of five lesions scattered throughout my frontal and parietal lobes. And if that weren’t enough, this time the impression doesn’t read “metastatic disease not excluded,” but instead, “concerning for metastatic disease.” The news just kept getting worse.
The Search for the Source
Armed with this information, the search for the primary source of the cancer began. Blood tests, mammogram, colonoscopy, and CT scan were all clear, with no signs of tumor or other forms of cancer. Time for the PET scan, which reads cellular activity. Since cancer cells have more energy, the PET scan is generally able to pick that up. Not flawless, of course, but highly reliable. Unfortunately, I had to wait another three weeks before they could get me in for the PET.
I was instructed to eat a low-carb, low-sugar diet the day before the PET scan and eat or drink nothing but water the morning of the procedure, which I followed to the letter – except that habitually and without thinking, I ate an Altoid on the way to my appointment. I mentioned this during my prep, wanting to be completely transparent…and they sent me home. One little Altoid – two grams of carbs – two hours before the procedure was supposed to begin, and I’d ruined my shot. Because of how the body processes sugar, it can taint the results of the PET. I was devasted – I had already waited so long, and because of my thoughtlessness, I now had to wait longer. Thankfully, though, I was able to get in just five days later. And you can bet I didn’t consume any carbs for days before that one!
Thankfully, I received the results quickly. The PET scan had picked up no signs of cancer in my body. Many of my loved ones took this as excellent news, but honestly, I didn’t know what I felt. Where is this cancer that caused my brain metastases coming from? Are the lesions even brain mets, or something else?
What’s Next
As of this writing, I await a lumbar puncture (spinal tap) to check my cerebrospinal fluid for leukemia or non-Hodgkins lymphoma. If that produces no results, which the doctors believe is likely, it’s time for them to biopsy one of the lesions. This is a process in which they will shave a small section of hair from the top of my head, cut out a circular piece of my skull, enter my frontal lobe with equipment I don’t care to see, and grab a piece of the lesion to send to pathology. The piece of my skull will be replaced using screws, and I will spend the night in the hospital for recovery.
Scary, right? But for me, it’s far more frightening to live with this unknown. It’s difficult to confront the enemy when you have no idea what the enemy is. What is happening in my body? And what do I do to help myself?
Alternative Treatments
Early last Saturday morning, I received a Reiki treatment from an incredible healer. Without initially realizing it, on Saturday and into Sunday morning, even though I still had head pain, I felt more like myself than I have in a very long time. I had much more energy and stamina, my mental state was vastly improved, and, in general, I almost felt like I did this time last year. It was incredible. Then, on Sunday evening, I participated in a remote energy healing session, and again, I felt so much better the next day.
I had nearly three days in a row of really feeling like me – not tiring so easily, not needing to step away from my computer when doing my editing work, being able to do my graphic design, all of which I adore. I was able to be truly present with the people I love and to care for and spend time with the many animals in my care. Even being able to clean my house was a treat. I’ve been in a state of pain, exhaustion, and depression for so long that I actually forgot what it felt like to be me.
Being part of the Essential Naples and Natural Nutmeg communities, I’m fortunate to have access to some truly amazing naturopathic healers, doctors, and nutritionists; energy healing, counseling, and meditation; and a vast range of knowledge of healing herbs, oils, foods, and supplements. I am also attending the Energy Medicine Solution Retreat that takes place October 12–15, 2023, both in person in Bristol, CT, as well as virtually.
Facing cancer and its traditional treatments is certainly frightening, but with the resources available through this magazine and these communities, I feel strong, supported, and ready to fight this thing head-on.
Lori Hubbard, MA is Editor-in-Chief of Natural Nutmeg and Essential Naples magazines, and is also a freelance editor, writer, and graphic designer.