My first anti-convulsant med helped keep me seizure-free for over a year. As the seizures started, it was slowly increased in dosage to no avail. My neurologist changed that medication out for another, which has seemingly stopped working, too. Each medication has reduced the frequency of my seizures; however, I have experienced two severe episodes in the last few months. Each time, I tumbled pretty hard. The second time, I fell several steps and eventually went to the ER, wondering if I had a cracked rib. Thankfully, neither incident caused much harm. The wound, however, is more emotional and psychological. Yes, my entire torso might have been covered in bruises, but the real damage is in my psychological state. I want to move forward, and it seems the only real thing preventing doing just that is the seizure activity. I can manage the anxiety, kind of. The fatigue requires a good midday nap. The seizures are detrimental. My neurologist suggested that I enter an epilepsy monitoring unit (EMU) to understand the brain activity further and see if we might find a way to manage the seizures. He had mentioned this in the past, too. Initially, the thought of being inpatient (yet again!) in a neuroscience ward where I would not only be monitored 24/7 by a team of doctors and techs trying to induce seizures sounded horrific and barbaric. However, with the increase in activity, it seems the best option is to undergo monitoring to comprehend the root cause of the brain activity. Perhaps this will entail surgery or some other form of intervention. Right now, that is very much a mystery. The only thing that is understood is that this is hurting my emotional healing and recovery.
Waiting for an MRI or CT scan results is no fun whatsoever. Honestly, there is something about bloodwork that feels worse, more challenging, more painful. Perhaps because of the speed at which labs are drawn and the agonizing waiting period. An MRI, as well as a CT scan, require some form of preparation. Blood labs are quick: in / out / get out. I can’t speak for other facilities/clinics, etc., but there is a lengthy waiting period for results. I say “lengthy” because when you’re pacing around like a nervous wreck waiting on results, even if just for a few days, every second feels like an eternity. I had my labs drawn on Friday, February 1, 2019. So, considering the time delay with the weekend, I might not hear until mid-next week.
When I was first diagnosed, I was asymptomatic. As I have mentioned in numerous updates and blog posts, my only symptom was what I thought was a chest cold (cough, slight wheeze, etc.). When the recurrence was noted, I had absolutely no symptoms – none! At the time, I was shoveling snow off my roof, stacking wood, and going on lengthy treks in my beloved woods. There wasn’t a single indicator that something was even remotely amiss.
I don’t trust my own body. It is a sad thing to admit, but I don’t. I wrote a poem about this shortly after diagnosis, in which I kept repeating the line, “body, tell me things!” I was pleading with my being, physical or otherwise, to give me a sign, speak up, and present to me in waking life or dreams that something wasn’t right.
I know my body will eventually heal. “You are powerful, Jeremiah,” my oncologist recently told me. Without wishing to sound pompous, I know this – I already knew this.
In this manner, trusting my body to heal, I know it will always recover. Even after multiple, multiple rounds of cell-killing chemotherapy, a drenching so great I am surprised I survived my two stem cell transplants after the chemical bath I received during my initial treatments, my body bounced back. But somewhere, somehow, it doesn’t communicate what I need to know beforehand, which is most important.
Body, tell me things!
Germ cell tumors, i.e., ovarian and testicular cancer, are hard to detect. Thus, they have often been called the “silent killers”. 19% of ovarian cancer cases aren’t detected in the early stages of development. Testicular cancer, being in the same family, is very similar. A “chest cold” is the symptom of metastatic lesions throughout my lungs; a seizure was my body finally communicating with me that the cancer had reached the end of the line.
Body, tell me things!
I want to trust my body. I want to know what is going on and developing within me. I am paranoid now. One day, I will exercise, usually in the form of cathartic dance/movement, and the following day my thighs hurt. Naturally, this makes sense; I had been dancing ecstatically 24 hours before. My mind, however, is wondering what else might be there or lurking below the surface.
Body, tell me things!
Sitting here waiting for results, I am in that place of treading water again. My MRI is scheduled for February 5, requiring a long wait. I don’t feel this is a life — no, I know it isn’t. Scans are three months apart. So, for 1.5 months, I have been delighted, I have been resting, I have been gaining strength, etc. The next 1.5 months are a time of wondering… questioning… fearing… dreading, sleepless nights, and days walking around trying to retain what’s left of my sanity.
Body, tell me things!
I want to slip back into that blissful state of nativity. The days, the years, all 33, when a chest cold was just that, when sore thighs resulted from exercise. The years in which I didn’t wake up in the middle of the night and dread the darkness because of all the unknowns it might hold.
I should know this by now, but I don’t’; things change very quickly– alarmingly so.
The other day, I noticed that typing with my left hand was challenging. It wasn’t easy to access specific keys. Later that day, when attempting to play guitar, I again noticed that the fluidity with which I usually fingered the chords (using my left hand) wasn’t present.
The following day, while driving back from an appointment, I lost complete mobility in my left arm. Unsure if this was a seizure, a stroke…, or a clotting issue, my sister took me to the ER. As most of my ER stories go, they did several tests, the first of which, after vitals, was a head CT scan. What they discovered explained the loss of mobility/motor function in my left arm – a 3.2cm lesion on the back rear (right) lobe in and around the parietal and occipital lobe. (this is what I’m piecing together from the various doctors I’ve met. still trying to grasp the facts.) My MRI on Jan 30 showed no sign of this (what is assumed to be) metastatic spread. Unlike the other brain lesion that was dealt with using solely stereotactic radiosurgery (SRS) in early October (2016), this one will initially be surgically resectioned, and then SRS will be used. The main reason for that is its size.
This will most likely push back the stem cell transplant a few weeks or so, considering the healing time and then the radiation therapy afterward. That & this new and particularly aggressive/fast-growing brain met seem most urgent.
The surgical resection is scheduled for tomorrow, Apr 30, 2017.
Oct 11 (2016) marked six months since beginning treatment. This time has gone prolonged and alarmingly fast.
When I returned to Maine to begin treatment, the trees were covered in tightly wrapped buds. I watched spring arrive – of course, we’ve all done this. Though, because of the long days of chemo, I was hyper-aware of time and its passage. The buds on this particular maple tree seemed to tease me and almost prolonged their encasement, knowing how desperately I wanted spring – greenery – warmer and longer days…
Today, I noticed the leaves are falling.
Here are some photos of the SRS (Stereotactic Radiosurgery) procedure. Looks like a science-fiction film set.
I’m feeling exhausted today; a lot has happened throughout the week. The stammer, which developed well before the SRS, still lingers and makes talking exhausting.
healing is a circular path 