More of the Recent Happenings

I’d like to start my first post by thanking all those of you who have blessed us with your friendship, whether we have met in person or not, your kindnesses have touched our hearts, and have helped to aid in my healing.  Thank you.

The back story:  I went off of the ketogenic diet for Christmas break, as I did last year in which I had no ill effect.   The difference this year was that I did not go back on it January 2nd due to the fact that I had several influential people in my life, of whom I respect greatly, telling me that the diet was extreme, perhaps even dangerous.  Even my local neuro-surgeon, whom we adore, told me “don’t do that silly stuff, just eat a healthy well-balanced diet.”  Since the diet is ever so challenging, and not too vegan friendly, I was more than happy to abandon it.   Late February, I had a parietal seizure, which was like an electric shock from my head all the way down to my toes that lasted about 30 seconds, and caused great fatigue.  It scared me enough to have Sam call 911.   The ER did a CT scan, set up an appointment with the local neuro-doctors, and sent me home that evening.   I stopped driving of my own accord for about two weeks, and then since I had no other signs and the doctors were not concerned, I started driving again.   I  had driven myself to a local theater to see the girls’ orchestra perform for “Symphony Day” and while sitting in the back row, I had another parietal seizure.  I had the exact same reaction--shaking and fatigue.  Sam drove us home that day, and I gave up driving for a second time of my own accord.

Two weeks following that seizure, I was at home alone, and woke up on the couch in the sunroom feeling exhausted, and knew something was amiss.  I tried walking, and in my confused state texted Andrew.  My texts were disjointed, so he called to see what was wrong, and ended up leaving work when he heard my voice and all of the fatigue and confusion.  I was lying on the office floor when he came home, he turned me over and saw that I had hit my head fairly hard as I had a very bruised eye.  Fifteen minutes following his arrival home, I had a grand-mal seizure.  We assume I had had one earlier in the sunroom and must have hit my head on the coffee table which meant, I had had two grand-mal seizures within a very short amount of time.  Andrew called 911, and off I went to the ER for the second time in two weeks and ended up staying all day and through the night under observation with a litany of tests performed including an MRI.

We ended up going to Cleveland Clinic the following week to discuss my MRI.  My neuro-team there said that they believed the tumor may be up-grading from a grade 2 to a grade 3 based on enhancement seen on the MRI.  They recommended another surgical resection followed by chemo and radiation (the standard of care).  For the past five years we have been hearing from these same doctors that chemo and radiation will not work for my tumor and that my genetic coding is resistant to this particular chemotherpay, so this change in treatment plan was alarming.  It felt hopeless, worthless, and as if they were taking their hands off of the steering wheel while driving full speed.   I asked my neuro-onclogist his thoughts on the ketogenic diet, and his comments were that it is tough for adults to do, so they do not recommend it as a treatment, but do prescribe it for certain epileptic children as their parents can control the diet for them.  In other words, adults cannot control what they put in their mouths even if their lives depend on it.  But, a mother’s love and determination to live can certainly conquer the tongue’s desires.

I told Andrew that I wanted to go back on the ketogenic diet for at least 6 months, and he agreed to do it with me this time.  (Yay!!!)    I had been on it for almost 2 years, with very little variety in my diet, mostly eating eggs, packaged salmon, and coconut oil.   Due to the left frontal lobe location of my tumor, my executive functioning powers have declined considerably, thus following directions with multiple steps, or explaining multiple steps verbally is fatiguing and frustrating for me.  However, with Andrew--the food lover on board, my culinary life has exploded with all sorts of delicacies from exotic sandwiches with tasty sauces to lemon cheesecake!  Andrew has also benefited from the diet, with the loss of 20 pounds.  He is down to his high school weight, and looks as gorgeous as ever.  :)

My new local medical team is on-board with the diet and very excited about my progress.  They have helped me to acquire testing kits for at home to monitor my blood ketone levels, and have ordered PET scans to see how much glucose my tumor is up-taking.  This is not yet an FDA approved treatment for brain cancer (although it is FDA approved for use in childhood epilepsy).  The folks helping us (my internist, neurologist, PET scan technician, and neuro-radiologist) have been beyond wonderful with their energy, dedication, and enthusiasm.

A week and a half ago, I had my first PET scan as a “baseline” marker, with the plan to go back in in two months and have another to see if the tumor has been affected by the diet.  The unfathomable part of the test result was that there was no visible difference of glucose uptake by the tumor site than in the rest of my healthy brain tissue.  Which should technically mean that there is NO cancer, just a big empty black hole where the tumor was cut out, which explains a lot.  ;-)  Andrew asked my internist what this means, and she said “I don’t know, but keep on doing what you are doing—don’t change one thing!”  So, this Wednesday, we will drive up to Mayo Clinic and will present them with all of the information we have gathered from tests here and at the Cleveland Clinic, and see what they have to say on the matter.  Wish us luck!

Autumn