Diagnosed with a Brain Tumor? One Caregiver’s Guide to Glioblastoma and the Universe, Chapter One.

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Last night my friend, Patty told me about a woman that was just diagnosed with brain cancer. My heart shattered as she unfolded this family’s monster sized challenge… four small children and a diagnosis of glioblastoma.  In a matter of minutes I had dumped a serious load of medical terminology, experimental treatments, names of therapists, the perfect brand of gin for this level of anxiety and how to stay sane while surrounded by insanity.

I suddenly realized that maybe our walk from the classroom to the car wasn’t the best vehicle for delivering this mother load of information.  Instead it might be better to convey this surreal experience and the things I’ve learned in an easier to digest format. Thus I present, One Caregiver’s Guide to Glioblastoma and the Universe (gives me wiggle room to talk about anything I want!).  Over the next few months I will share some of the things I’ve learned and experienced that might be of value to those finding themselves an unwilling passenger on this crazy train.  Gentle reader please note, these are my experiences and they may be very different from your own.  Resist the urge to cuss me if my experience is foreign to you. Instead, share your unique view in the comments section.  Darwin believed that diversity was crucial to survival. For those of us in the middle of the chaos called cancer, this may be truer than we’d care to believe.  So again, do us all a favor, increase our chances of getting through this mess with some level of dignity and sanity by sharing your experiences and lessons and freely stealing from mine.

One Caregiver’s Guide to Glioblastoma and the Universe:

A compilation of suggestions given in order from diagnosis to deliverance

1. BREATHE

I know this sounds cliché, but sometimes clichés are clichés for a reason.  When Dan went to the ER because he could not feel the left side of his body, the last thing we expected to hear was that he had a lesion in his brain.  AT THIS POINT, YOU DO NOT KNOW WHAT EXACTLY IS IN YOUR LOVED ONES BRAIN. This is hard to accept. Is it cancer?  Is it a benign or slow growing tumor?  Is it your missing class ring from 1985?

You will not know for sure until the doctors get part of the tumor tissue and have it examined. It was our first instinct to yank that thing out as fast as possible.  This is the time to BREATHE and think about your options because you do have some. The typical “standard of care” is brain surgery ASAP if the tumor is in a location that can be accessed. It is important now to stop, breathe and consciouslychoose your next course of action.

2. WHAT ARE SOME OF YOUR OPTIONS?

Option one. Many, many people will tell you that the single most important thing you can do for your loved one is find a hospital that has a top notch brain tumor center.  It could be the difference between life and death and that’s no hyperbole.

One crucial thing to consider however is that you could be at the hospital for several weeks if not more.  This can cause major expense and inconvenience.  I know it sounds harsh, but you have to consider the practical sides of the situation.

Option two.   You may choose to attempt to shrink the tumor with the ketogenic diet BEFORE surgery. The smaller the tumor, the less slicing and dicing.  This is also important to consider if the tumor is located where it cannot be safely debulked (made smaller).  I purposefully did not say, “removed” because some tumors such as glioblastoma, cannot be completely removed.  Its cancerous tendrils tend to snake through the brain.  The surgeon will remove what they can see of the cancer and leave radiation/chemo to take care of the rest. The more they can remove, the better the outcome (typically). There are MANY studies (clinical trials) on the keto diet so your neuro-oncologist should be able to point you in the right direction.  If you need more information on this, click here or contact me.

3. GATHER YOUR TROOPS

You can’t do this alone.  Trust me.  Find your true friends and put them to work. They feel better when they are helping.  Put one to the task of figuring out your health insurance if you have some.

Have them type up a simple sheet stating your basic information (co-insurance, deductible, max out of pocket expense) that can be easily accessed (Thank you, dear Mandy).  Also have them set up some sort of database to help you keep up with what you have paid.  Don’t trust your insurance company to be accurate with this.  They aren’t. Have another friend start an on-line fundraiser page of some sort.  Have all your friends promote it.  Unless you’re Trump (and who wants to be?), you’re going to need it.  Make sure the page is set up in your name otherwise they will be responsible for taxes on the amount raised.  I’ll write more in depth about this later.

I think this is enough to set anyone’s head reeling.  Focus on the positive. Sleep. Gather your troops. Find your God. Know your power and your limits.  Till next time…

I think this is enough to set anyone’s head reeling.  Focus on the positive. Sleep. Gather your troops. Find your God. Know your power and your limits.  Till next time…