Friday, April 24, 2015
Mayo and My Heart
The story of my heart: In 2011, Andrew and I had our blood work done while living in India, as it was very cost effective along with being a comprehensive work up which is next to impossible to receive in the U.S.. We weren't expecting anything eye opening, we were just curious and were in India, so why not? Andrew's came back with beautiful results (of course), but the cardiologist wanted to meet with me as he said my cholesterol levels were concerning--my HDL was too low, and my LDL was quite high. I was a vegan at this time, living on salad greens, lentils, and green tea, and exercising daily--unlike my sweet, eat whatever he wanted, didn't have time to exercise husband. The cardiologist said to cut out the lentils and to come back and see him in a few weeks. I never did go back, and I really did not believe the lentils were driving up my cholesterol...I simply let the concern slip from my memory.
Fast forward to last month, when my internist/family doctor had my blood work done and checked my cholesterol levels. (I did not realize that she had ordered a cholesterol work-up, and had completely forgotten that I had ever had high cholesterol levels. O' the bliss of ignorance!) When I went in for my follow-up appointment she showed me the test results. She was quite concerned by my cholesterol levels, thus scheduled an appointment for me with one of the top cardio doctors in the U.S., who happens to be at Mayo, three floors down from the neuro doctors.
Unfortunately, it appears that the two organs, that are supposed to be my wisest and heartiest are playing a cruel joke on me, making my life much more complicated than I'd like it to be. I don't look sick, and I don't think I am "sick" per-say, I think I simply must have awful genetic coding. Perhaps my parent's drug/alcohol use messed up my DNA. I really do not know why I am so unlucky health-wise. There is no heart disease nor cancer on either side of my direct family line. It's a mystery to me, and to all involved.
....so, we are waiting to hear from my neuro-surgeon next week to see what he recommends and then try to coordinate that with the heart specialist for more testing and see which naughty organ needs the most urgent care.
You never know what today holds, so love deeply, and live authentically. xoxo Autumn Marie
Wednesday, April 22, 2015
Mayo Clinic Visit with the Neuro-oncologist
Today was amazing. For one, it is simply wonderful to be back in Minnesota with the beautiful landscapes, fantastic Caribou coffee, and all of the "Minnesota Nice People." I don't know if it's just me, and my Minnesotan roots, but this place is special. :) Mayo Clinic is also special. The neuro-doctor was extremely thorough, and gave us a good hour and a half of her time. She is a gorgeous blond woman in her fifties with tons of degrees behind her name. I was a tad envious of all her accomplishments, but am SO very grateful for people like her who dedicate their lives to specializing so acutely.
Her recommendation was very similar to the Cleveland Clinic's--surgery followed by chemo and radiation. Apparently, the standard of care changed this year for my type of brain tumors due to studies that found patients who combined the two, instead of the usual radiation only regimen, lived longer, some up to ten years longer if I remember correctly. ;-) I learned that PET scans are fairly useless where the brain is concerned, because unlike the rest of the body, the brain is a monstrous consumer of glucose and actually absorbs more glucose than a grade 4 tumor. She has heard of the ketogenic diet, but feels it is quite burdensome to do (which is spot on), but said that if it empowers me to be doing something than to keep on doing it. (Due to the lack of accruable data on the diet and its effect on cancer she is hesitant, but did mention that it could help with seizure control). :-) We asked her about the Polio Vaccine for brain tumors, and well, that is also preliminary, and the reality with that appears bleaker than the ketogenic diet.
The neuro-oncologist also stated that although my situation is not curable, I am among the "healthiest" in my situation--young, fit, strong, and sharp (very generous of her I'd say). So, although I am not in any way lucky to have a brain tumor, I am among the luckiest of the brain tumor lot. ;-) The neuro-surgeon that does brain mapping with the craniotomy was out of the office as he is recovering from running in the Boston Marathon, but will be back next week to review my case. So, we will wait to hear what he thinks. I met with him 5 years ago when he first came on with Mayo. He's a very nice, personable, confident doctor, and we would feel confident to have him perform the surgery if we decide to go that route.
Now we are headed to central Minnesota to check in with Andrew's folks for a short visit and will head back to Mayo tomorrow for one more appointment. Thanks for checking in! xoxo ~Autumn
Her recommendation was very similar to the Cleveland Clinic's--surgery followed by chemo and radiation. Apparently, the standard of care changed this year for my type of brain tumors due to studies that found patients who combined the two, instead of the usual radiation only regimen, lived longer, some up to ten years longer if I remember correctly. ;-) I learned that PET scans are fairly useless where the brain is concerned, because unlike the rest of the body, the brain is a monstrous consumer of glucose and actually absorbs more glucose than a grade 4 tumor. She has heard of the ketogenic diet, but feels it is quite burdensome to do (which is spot on), but said that if it empowers me to be doing something than to keep on doing it. (Due to the lack of accruable data on the diet and its effect on cancer she is hesitant, but did mention that it could help with seizure control). :-) We asked her about the Polio Vaccine for brain tumors, and well, that is also preliminary, and the reality with that appears bleaker than the ketogenic diet.
The neuro-oncologist also stated that although my situation is not curable, I am among the "healthiest" in my situation--young, fit, strong, and sharp (very generous of her I'd say). So, although I am not in any way lucky to have a brain tumor, I am among the luckiest of the brain tumor lot. ;-) The neuro-surgeon that does brain mapping with the craniotomy was out of the office as he is recovering from running in the Boston Marathon, but will be back next week to review my case. So, we will wait to hear what he thinks. I met with him 5 years ago when he first came on with Mayo. He's a very nice, personable, confident doctor, and we would feel confident to have him perform the surgery if we decide to go that route.
Now we are headed to central Minnesota to check in with Andrew's folks for a short visit and will head back to Mayo tomorrow for one more appointment. Thanks for checking in! xoxo ~Autumn
Tuesday, April 21, 2015
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
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
Adding Autumn
Autumn and I have decided to jointly post to this blog - as she has been receiving many questions from friends and family. She is a much better "poster" than I am. So, the next post will be from her...
Andrew
Andrew
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