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September 2015

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The Ultimate Elixir: Family

I have another infusion today of the NDV. We’ve just returned from visiting my Polish family, it was the highlight of the trip! Dan finally met Anna, Zosha, Krzysztof, Marcin, and Kasian. I’ve been battling an infection, and it evolved into my lungs, so I hope I haven’t been getting others sick. My brain is all over the place because of my cold, and my exhaustion, but like our overweight cat Bingie, I’m fat and happy. My family treated us like royalty. The food, the love, the laughter. It was so much fun! Mushroom hunting with the family. It’s grandma’s favorite activity.  Checking out the old town of Gdansk where my family lives with my cousins Marcin and Kasia. We walked something like 40 flights of stairs to the top of the church for the best view. My hamstrings are still killing me. I’m embarrassed by how out of shape I’ve become. For penance I’ve been doing sets of ten push-ups every few hours in the hotel, I squish it between coughing fits. Kasia hard at work with the family tree. She and I will continue the family traditions, making sure the family stays in touch forever. It’s really crazy, Dan noticed so many similarities between Kasia and I. It’s in our mannerisms, we say the same thing at the same time, we laugh at the same stuff, she is my Polish sister. I feel exponentially blessed to know my Polish family. My cousin Marcin is brilliant and thoughtful. My Aunt Zosha is just like my mom, taking care of everyone all the time, even Uncle Krzysztof notices the similarities between my mom and aunt Zosha. It all happened because my dad took an address from an old envelope from family correspondence between elders, and he tracked down grandma Anna while he was…

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Medical Honeymoon

Remember how the German clinic asked me to come back ASAP to harvest more dendritic cells? Well? Fortunately, Dan had been banking sick leave for almost a year and a half, knowing this day would come, so he was able to join me. We have a house sitter at home so that Bing the cat won’t be too lonely, and Emma dog is with Grammie Linda. With our babies taken care of, we’re off on our biggest adventure to date. Originally, the clinic made specific dates for treatment, and we are making our way that direction. Today we are in Dordrecht, staying with a Dutch family. (We’re traveling in a combination of guest houses/loft rooms and hotels working to keep costs down, but also we wanted learn more about the native cultures and there’s no better way than staying with the locals.)  The Netherlands is so charming, and the people are cheery and kind. Dordrecht is the oldest city of all of the Netherlands. The buildings, the churches, it’s pure charm. It’s sleepy, and fresh. This afternoon, we went for a run around the cobblestone streets, and now after bathing, I’ve wiggled into a plush blue velvet couch to type. Dan went for a walk to the local market to grab some beer, and wine. We have to take advantage of our gorgeous rooftop patio.  We already have some local spelt bread, fresh cheeses, and cured meats. I became obsessed with the local veg since they’re all grown right here and are dirt cheap – and FRESH. I am gobbling up cucumbers left and right. Pennies on the dollar. In fact, if they grow it here it’s dirt cheap. I can’t believe how affordable everything is! Now, you won’t find pineapple or other luxury perishable items, but who needs ’em! …

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The Carrolls meet THE Carroll

I’ve been up since 4:00 am and it’s all because of a seizure. I’ve had a seizure in my sleep before (according to Danny – I don’t remember it), but on September 11th, just a few days ago, just at the same time as the anniversary of the twin towers collapsing, I was jolted out of bed, screaming to Danny that I was having a seizure. He jumped into action, knowing fully what to do, but I couldn’t stop myself from screaming, “Water, pills, water, pills, water, pills, hurry, hurry!!!” It was like I was in a trance. A trance where you can’t feel or move your right side. A trance where you have no control over your body, or your mind. It was powerful, but not a grand mal. My whole right side, from the tip of my toes to my cranium was tingling and throbbing. I was paralyzed, even unable to drink on my own. Danny held a glass to my mouth as water sloshed all over my face and neck, soaking our mattress. When the seizure subsided, I couldn’t talk or think or make sense of what had just happened. So here I sit in the dark while most people sleep. I don’t sleep because I’m afraid to. I don’t know how long this fear will last, and I know it will abate, but I wonder if this new experience will stick with me forever. Will I always have a deep-rooted fear of a sleep seizure? Is this going to haunt my dreams, nestle into my subconscious? Ever since I was diagnosed I’ve been afraid to miss anything. I want to soak up life, to enjoy every moment. But sleep is paramount too. I’m not sure what I’m going to do about this new found issue. I…

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