Yesterday marks the two year anniversary of this blog! I hope it has been encouraging and helpful to you, it definitely has been for me- as I feel I can be there for you a little bit more even though I don't live next door. I will support and be there for you whether you like it or not for as long as we live and beyond that. I'll never give up on you, I'll never let you feel incompetent, I'll never let you doubt yourself. I will always encourage you, I will always build you up, and I will always help you focus on your incredible strengths. Your journey has been a crazy and inspiring one. One day we will be in heaven, looking over your life and be amazed at some of the surprisingly positive ways your tumor changed all of our lives. I know there is only so much that I can say, having not gone through what you have. I found an inspiring blog of a woman with re-current brain tumors (tear) that I thought you might be interested in looking at.
http://www.virtualtrials.com/survivecheryl.cfm
Here is her most recent post:
Update 1/25/2014
I feel like I can breathe again. On January 13th, 2014, I had my last MRI and got good news. The tiny 4mm "thing" that showed up this last August, looked the same. It consistently looked the same on my MRIs this past September, November, and now January, 2014. My neuro-oncologist in the past thought is was likely the GBM back again, but since it has not changed over the last five months, he now thinks it is just a cluster of arteries. Over time, radiation often causes "vessels" to weaken and break down; in response our brains can try to "fix" it by growing new tiny arteries around the damage. So at this point, we are moving ahead thinking it is NOT recurrence #5. GOOD NEWS! Again, wow, I can relax (a little) and breathe again. I will get my next MRI in April, 2014. Three months! That is the longest time I have had between MRIs in a long time. It is amazing that how you "feel" can change overnight. As the MRI drew closer, I began feeling more like a cancer patient, depressed, stressed, weak, fatigued, like life was so limited. Then I got good MRI news and I felt like a new person. This morning I woke up with energy like I could do anything. It is hard to describe the difference, but it is like from death to life! It is so scary how much power our "thoughts" can have over how we feel. I know this from my experience, but I still can't control it well. I need to keep telling myself over and over again, when I am having a "hard" time, that it can (will !!!) get better. It's crazy how I can go from feeling like curling up on the couch and rotting away, to the next day feeling like I could run a marathon! Talk about an emotional roller coaster ride. And for me, this "hard" time lasted 5 months, since getting questionable MRI news this past August. Talk about being "traumatized". My heart goes out to you other brain tumor patients and caregivers going through the same struggle. It's not easy. But please hold on there, when you are having a hard day (or months!). It can get better! Keep telling yourself that over and over (like I try to do myself!). I will continue doing the same things – alternative treatments. Taking the many supplements each day and eating organic. I followed the Ketogenic diet for 2 months, but it was too hard for me. So now I am following the "Paleo" diet, low on carbohydrates, but you can eat more veggies and fruits. And one day a week, I am letting myself eat the "bad" stuff (high carbs). So I can have popcorn at a movie; or bread at a restaurant! But only one day a week! (well, I am bad when on vacations). I had been on the DCA for over 2 months, but went off of it when my feet started to get numb. I love backpacking so do not want numb feet! So I started taking Metformin a couple weeks ago instead. Only 250 mg a day at this point; I may go up to 500 mg (I know of some cancer patient taking 1,000 mg+ a day). There is more research out there on how it helps fight cancer, so I will stick with it! I am also continuing to take the medical marijuana. I hate the stoned feeling the THC cannabis makes me feel, so I am only taking the CBD cannabis. I take about 0.1 gram each night at 8 pm and it helps me relax in the evening and sleep like a rock at night. There is more and more research showing how it helps fight brain cancer too!!! I will keep exercising five days a week, sleeping 8+ hours each night, simplifying life to reduce stress, and giving it all over to God who is the foundation of my peace, HOPE and joy. And just as all my brain tumor friends, I will continue to live from MRI to MRI. Hoping that we will all get some good MRI news in 2014.
I think we can learn a lot from her Meaggy! Good nutrition, excercise, enough sleep, enjoying life, and G-O-D, are the answer here. (To bad the medical marijuana thing is actually not good for your specific case lol). Keep that in mind and keep on keeping on... always remembering that brain injury recovery is not counted in hours or days or months, but in years. You are amazing chica, I'm proud of you, and I love you!
XOXO,
Brooke
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