Thursday 21 May 2015

Patience

At the moment I'm sitting in my room thinking about all the things I need to do but I'm doing very little about it. This is definitely a case of paralysis by analysis and certainly very out of character for me. I have just had a minor skin operation (I will discuss this more in future) and I am waiting on a number of things so I need to be patient. Everything on the outside is so calm and still yet thoughts inside my head are spinning around rapidly. This time it is predominantly with excitement so I can deal with that! 

May started with me receiving my MRI results which were very positive. Rather than the usual routine I had come to expect from these meetings, we barely mentioned anything about the latest scan results because it was so clear that they were the best they could be and I had recently come off levetiracetam completely so even though there is always a doubt, I was quietly confident. My symptoms were largely resolved and I could see out of the corner of my eye that the scan showed noticeable improvement. 

My oncologist seemed very interested in my unique personal approach to the ketogenic diet and asked me a lot of questions about how I thought it should be implemented. He asked me if I am working at the moment because he is very keen to have me on his team in some capacity to help other patients with the ketogenic diet in clinical settings and to further research in this area with the potential of starting clinical trials. I was delighted with this opportunity and I instantly stressed how keen I am to get started as soon as possible. I have been desperate to get back to work for a long time but was unable to due to fatigue, dizzy spells, vertigo, trigerminal neuralgia, all that fun stuff that I barely feel at all now. I'm still waiting and a little impatient but I have been assured that he will get back to me soon. For my records I asked for a copy of my last 2 MRI scans so that I can compare the 2. 

I'm now going to ask for the CD after every scan so that I don't have to wait for results. I have found that to be quite a stressful thing in the past, luckily I have a pretty good idea about how to best interpret these scans. In a strange way I quite enjoy it because the brain is so fascinating. Here is a video of my latest scan that I took while I was bored! Below is one of the stills. 

*video coming soon



It is quite clear to me (although these scans can be quite vague), that the unusual looking tissue on the right hand side- left temporal lobe area- is scar tissue and that there is no visible disease here as there was previously. It looks a little menacing but it really isn't and I'm not overly concerned by it. I will keep an eye on this area and take every action I can to attempt to continue the healing process. Ideally in the future I would like hyperbaric oxygen therapy alongside my ketogenic diet to give me the best chance of achieving this and to potentially give me better survival odds going forward. I firmly believe that I can manage this disease indefinitely with the right metabolic approaches. Having the access to more of these approaches and the opportunity to help others in clinical settings would be a great step forward so I'm very excited about this prospect.

8 comments:

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  2. Very interesting. My husband has been on Keppra since the grand mal seizure that alerted us of his tumor and lamotrigine was added slowly when Keppra failed to control his partial seizures.

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    1. Yes, I'm certainly not a fan of Keppra! I understand that Lamotrigine is less sedating. How is he finding this? I am relieved to be completely off medication although mainting trace element homeostasis and balancing the electrolytes is a tricky method to apply at times. For me personally it is worth it as the side effects for me were debilitating on such high doses of both Keppra and Epilim.

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  3. He is currently on both 1500mg Keppra BID and not up to full dose of lamictal yet, 100 mg BID. He seems to be tolerating them well, though his seizures continue to get worse. He is currently at around 8 partials per day that last about a minute, and cause twitching in his leg and travel to his arm. We have recently contacted a nutritionist and will begin working with their company. Hoping it helps. Your story certainly is inspiring. I've been trying to get my husband to read your blog or listen to your interviews. He finds reading about his condition depressing. Hope he relents and sees how inspiring it is to read about survivors! Thanks again!

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    1. I was on a lot more than that and struggling with the seizures so hopefully he can find something that works to better manage the seizures with the medication. It's really tricky but if the disease remains stable you can experiment a bit more. I have found that magnesium and DHA is great for managing epilepsy. Being off medication means I have to be very precise with this but the extra protection of the medication may be useful for providing comfort if he wants to experiment with this.

      I understand his state of mind, I became very depressed and actually wanted to give up on many occasions. Support from family and friends pulled me through during very dark times. I don't talk about that much but it got quite serious at one point.

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  4. Thank you! I struggle to figure out how to best support him. I do the best I can, as he does too. I really do appreciate the responses.

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  6. Thanks you for sharing this. I struggle with patience also. It has always bothered me that I feel that they technician understands the results but can not give them to you. I wish I could just read their minds. They are so coy about it too. But it always makes me feel like something is for sure wrong with me.

    Kacey @ Glendale MRI

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