Confession

When you find out you have a GBM, it’s a terrifying and lonely experience. Some may seek other patients through support groups. Some find others through various online sources – Twitter, Facebook, etc. It’s important to find people who have an understanding of what you’re experiencing, to know you’re not alone. Caregivers need those contacts too, sometimes even more critically than the patient. Perhaps you get to the point where YOU can provide that support to others who find themselves with the same or similar diagnosis. It can be very inspirational and motivating. But it can also be very emotional.

Seeing your friends and/or loved ones decline or die – as many with GBMs do eventually – can become too much. Being reminded of what may be in store for you can become more than you can handle. Losing so many people to a disease you also have can send you into a serious downward emotional spiral. It eats away at hope and distracts you from the joys of everyday life. It’s your fate, be it tomorrow or 2 years or 10 years. Watching or hearing that someone is at the end of their journey can pack a wallop to your positive thinking.

And then there’s the guilt. You know that there are others out there that need your support and encouragement. You know that they may be suffering – emotionally and/or physically. You know they’re probably scared. You know they’re worried about their families. And yet, you’re afraid to get too close, become friends only to watch them suffer and potentially lose their battle. At least I am. Sometimes it’s easier to just stay in my little bubble of fear, self pity, and self imposed ‘ignorance’. I’m not strong enough to bear the burden, to watch them succumb to this disease. I’m selfish and uncaring, I’ve abandoned others, I’m emotionally weak. At least those are the thoughts that flow through my mind. It’s hard to admit this publicly, but I’m pretty sure I’m not the only one.

It’s okay for us to admit our weaknesses and fears throughout this process. It’s a whirlwind of emotions and there are good days and bad days. Other patients may have the strength to experience loss after loss and that ability is like a super power. I wish I had that strength, but knowing I could be the one suffering as I die at any point is too much for me to handle. If someone asks for my support or advice, I’ll be right there to offer it. But then I’ll likely retreat back into my hobbit hole of ‘ignorance’ until the next request. Honesty and guilt while compartmentalizing my experience between an open ended death sentence and managing my everyday life – just another part of having an aggressive malignant brain tumor.

Life With a Chronic Illness

I saw this video and felt I needed to share it. Morgan articulates what its like to live with a chronic illness in a way that illustrates the struggle, the loss, the prejudice, the heartbreak, the fear, and the hope of it all.

Morgan Grindstaff’s “What is Cystic Fibrosis?”

While Morgan is living with Cystic Fibrosis and not a brain tumor, his words resonate. We’re all hoping to survive.

Warning: there is some language that the more sensitive of you may find offensive.

Take A Risk And Live Truly

Death is not the biggest fear we have;
our biggest fear is taking the risk to be alive –
the risk to be alive and express what we really are.
– Miguel Ruiz

What risks are you going to take today?

What have you always wanted to do, but haven’t for fear of judgement? For fear of failure? For fear of…?

Who is your true self?

Time is short. Live for today. Let that true self shine through.

Take a risk. If it doesn’t work out, try again.

The real regrets in life are the risks you didn’t take.
– Habeeb Akande

Fear and Loathing in My Brain

After my little adventure a week and a half ago, I’m feeling a greater level of fear than I have in a while. I didn’t skip any of my medicine, I was feeling pretty great, celebrating a good MRI and yet I ended up having a ‘life threatening’ seizure episode.

I know the seizure event itself will knock me on my ass for a few days, but I’ve also increased my medication. It takes a while for my body to adjust to that as well. I find that I’m hyperconscious about every feeling, sensation, pain, or even thought I experience. Before my most recent episode, I was focused on speech, memory, mood as indicators that the tumor has returned. Now that I know that my expressive aphasia is a seizure and not an aura AND I’ve been instructed to use emergency meds to ward off a full blown seizure (or more terrifyingly, a series of life-threatening seizures) at the first sign of an aura, I’m ever aware of every sensation. Dizziness, nausea, sudden emotional changes, rising sense of cold… I may have had some of that before, but what got my attention was not being able to speak, and we’re aiming for whatever happens before that.

I know that lack of sleep and anxiety are risk factors for me, based on what we know at this point. But I feel like I’m starting over, trying to figure out my threshold for seizures – do I have other triggers that I’m not aware of? There are so many possibilities. Food additives, food sensitivities, smells, hormonal changes, certain sounds, barometric pressure changes, insulin levels, and so on. Then there are the possible auras: deja vu, numbness, tingling, sudden nausea, anxiety, fear, suddenly getting hot or cold, weakness, lightheadedness, strange smells or tastes, bright lights, blind spots, sensitivity to light or sounds, along with cognitive changes – like aphasia, just to name a few.

As a migraine sufferer – I’m experienced with the concept of triggers or early warning signs – but somehow the urgency to figure this out is greater…something about ‘potentially life-threatening’ I guess. Our trip to the Farmer’s Market was cut short yesterday because I ‘felt weird’ – a sense of cold rising up my body immediately before some panic and shaking set in. We’re a little gun shy, uncertain, and overly cautious, so Ativan was taken and we promptly went home. I’d be more confident about warning signs if I had full energy back and some sinus congestion didn’t make me a little wobbly.  I’m usually pretty in tune with my body, but this is a whole new set of symptoms, meanings, and risks.

We see an epileptologist tomorrow to learn more about what’s happening and what we can do to avoid another seizure. I have a feeling it won’t be a fully satisfying visit – questions unanswerable, mysteries of the brain, etc…  If he tells me I should wear a helmet, I’m going to be very disappointed.

 

In other news: We are already more than half way to our goal of $10k for the National Brain Tumor Society Silicon Valley Walk. I am feeling the love and support of so many friends and family. So, I’ve got that going for me, which is nice. Very, very nice.

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