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Impending MRI Impending Life

I don’t want to share this. I don’t want to say it. I hate that I have to release, but the truth is that I can’t handle my feelings. I have best friends, and I know that they would do anything for me. They know that I hurt, but they don’t know my pain because I can’t tell anyone, not even them. I’ve never told anyone how I badly I hurt. The pain of this, the diagnosis, the hamster wheel I live on. I give pieces to Dan, to my mom, to my dad, but if I gave any one person my whole sadness, it would be the meanest gift, and I refuse. Yet here I am, I can’t stand it anymore. But it’s a choice to read; close the window if it’s too much.I would rather cry alone, than burden my friends. I would rather hurt, and sob, by myself, because my friends have their own lives. No one’s life is easy. It has taken me years to understand that, but I get it now. I’m a ghost that is here, but that doesn’t live. People see me, or my hologram, but they don’t know me. I just float.I was meant to be a mother. I was meant to be a mom. What is my life without that? I found the most kind, handsome, generous, thoughtful, fantastic, man, but he always expected a family too. But now he worries about me. ME. He should have kids by now, he should have that beautiful love from his own children, that sticky snot filled, accidental wet bed, picky eating life, and I can’t give that to him. And what is a life without children? Seriously, to those of you who read this, can you imagine your life without your kids? That is the life…

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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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Germany Again? Excellent!

I’m home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it’s best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there’s nothing sexier than life, am I right!? I’m still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we’ve gone through. When you get diagnosed with cancer it’s like being thrown into a burning ring of fire, and sometimes you can find…

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More of Our Love. I don’t want it to end. Ever.

The toasts were beautiful. The love was better than anything I could dreamt of. When my treatment was halted a couple of weeks ago, I panicked and I wrote this, not knowing if I would die. Little did I know that I would have a wedding a few weeks later – a gift from Justin and Sam from Wayfarer – and all of their elfs (although I really want to sneak all of them into my pocket – they have island souls, the kindness.) I write and I often never share – shocking but true, but this is something I wrote and shared at our surprise wedding. I am grateful for life. I am grateful for Dan’s love. I am grateful that we have worked so hard that I am still here. This poured out of my heart on the flight home when I was denied a treatment because of bureaucracy. I didn’t know if I would be able to continue my treatment and it terrified me. But I am here, and if anyone needs help that that’s why I believe I’m alive. I will help you the best I can.“During my life there have been so many people that have been gracious, that have been patient. That have been forgiving, and supportive. There are all these beautiful souls that have surrounded me, raised me, protected me. They have enveloped me with love, a cocoon. But when I go home, when the lights are low, and real life hits, Dan has always been there. In those dark moments I am never alone. I get engulfing hugs, big bear embraces. He wipes away my tears, then he cries with me. From the incisions and scabs, and staples and bald days, and my original wordless existence. My lack of humor. The stress he has endured…

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Surprise Wedding

I can’t believe we pulled this off!! We just threw a “Surprise Wedding” for the most amazing and deserving couple. #tears #bucketlist #mylastdays2 #braincancer #livelikeyouredying #ittakesavilage (literally) A photo posted by Justin Baldoni (@justinbaldoni) on Aug 15, 2015 at 5:48pm PDT So Justin Baldoni, and Wayfarer Entertainment just helped me surprise Danny, and my family with a wedding. Everyone thought they were coming for my 35th birthday party, but when they arrived the film crew informed them to please take a seat for our wedding. It’s a very long story and it has been incredibly hard for me to keep the secret. It was absolutely unbelievable with all kinds of surprises. Our episode won’t air until January or so, and I don’t know how much I can divulge, but in the meantime let me just give a few teasers: personalized message and invitation from Pete Carroll (PETE CARROLL!!!!), a gifted Nicole Miller dress from the upcoming 2016 line along with a hand written note, video messages, Vinny’s catering, gorgeous flowers, Archie Brooks officiating. Dan and I have been legally married for awhile now but it has been impossible to do a wedding because of our financial responsibilities due to my ongoing medical treatments. The wedding was incredibly small, and I wished I could invite everyone, but Wayfarer hosted it (along with some amazing islanders donating various aspects). It was not our money, so I was just grateful for the opportunity. When people give you gifts you just say thank you, you don’t ask to see if you can invite more. It was such a gift, and a beautiful dream that we had always wished for. There were beautiful toasts. There were songs sung, dancing, a little rapping, beautiful toasts, it was hilarious and heartfelt. I can’t believe I was able…

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A Film Crew?

Hey Guys! Thank you for all of the birthday comments, texts, and emails, and phone calls, and Facebook messages! You guys all make me feel deeply loved. On my birthday Dan surprised me by taking me on a bike ride along the Burke Gilman, which I have run but never rode. Riding bikes on the BG is awesome! I’s mostly flat and you can literally ride for miles and miles. It’s stunning. But that’s not even the biggest news. One part of the big news is that I am flying back to New York next week, the 19th, for an attempt at another immunotherapy shot. It should be fine though, I’m expecting smooth sailing so to speak.  The next part is that in 24 hours or so, SoulPancake a media/production company (“We create stuff that matters. That opens your heart. That makes you think. Our mission is to help you and your audience figure out what it means to be human and feel damn good doing it. Our brain batter of art, culture, science, philosophy, spirituality, and humor is designed to get people talking, sharing, and engaging with this crazy, exciting, creative journey that is life.“), along with WayFarer Entertainment, is sending out a crew to film Danny and I for an episode of a series about people who get diagnosed with cancer. It’s kinda crazy, and a huge honor to get to share what we’ve gone through, and share how we live our lives. My hope is that we can make others feel more comfortable about what they’re going through, or have experienced. And that goes for people who have been diagnosed with cancer, and those who haven’t.  We all have hard things that pop up in life, and personal stories always help me, so I’m hoping to inspire others and put…

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Heaven on Earth

I am embarrassed and relieved to report that my headaches were linked to a hormonal influx. I’ve never had that happen, I’ve never had such a horrible response to the female way. I don’t know if it’s because I’m nearing the end of my fertility (more or less) – or at least the norm of fertility.  This Thursday I will be 35.  This Thursday I will have outlived several of my various doctor’s expectations on my lifespan. In fack, back in 2011 insurance tried to push me into hospice. According to their calculations I didn’t have long to live.  I’ve come such a long way, learning how to read and write and walk then run.  I have enjoyed every single day. It never mattered if I was in a hospital bed, incapacitated in my own bed, or just the daily grind of trying to survive and enjoy life. I feel so grateful to be here. I am overjoyed every day that I wake up. I love life so much that it’s hard for me to sleep, I want to soak it up.  This is not the life that I thought I would live. I never thought I would get diagnosed with cancer at the age of 29, and I never thought – after everything we’ve gone through – that I would be this capable, and healthy, and happy at 35.  As you guys know, these tumors are aggressive and invasive, and I never know if they’ll be back, but good God I cherish this life. Every. Single. Moment. Which is why those debilitating headaches were so terrifying. Everyone has their own views on faith, and God, and afterlife, and truthfully, my views evolve and flux. I have no idea what comes next, but my soul tells me that I’m already…

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Progressive Headaches

Yesterday and today, starting in the early afternoon, I have been getting progressive headaches. By the end of the night it hurts so bad that my eyes start watering – just tears streaming down my face. It’s on the left hand side, the tumor side, and it throbs in the back, the tumor spot. It hurts so bad. And by the end of the night, like right now, it’s on fire. I have no idea why it would progress like this. I’m scared. Has anyone else had anything like it? Especially tumor folks? I wouldn’t be so afraid if not for the location. When I push down on the “soft spot” in the back of my skull where the incision starts, it lessons the pain a little. But that spot has always hurt to the touch so I don’t know if adding the pain of a new location is just distracting me.  Please let this not be a recurrence. Please let this be a fluke.  Please make it stop. Nothing helps. Not water. Not asprin. Not anti-inflammatories. None of my supplements. Not rest. I’m lost.

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