Monthly Archives

July 2015

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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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Converting the Baltimorites

Over the weekend Dan and I hosted Jess Abu and her husband Dre. Here are some of the highlights… Clearly we don’t take ourselves that seriously, which I think is why we have so much fun! From Susie’s Mopeds, with the protective rainwear jumpsuits, to all the ridiculous sunglasses we found for $2.99, to the electric boats on Lake Union, and everything in between. Jess is still here for a few more days – I wonder what other trouble we can get into?! Every day is a gift. Every laugh, every memory is just icing on the cake.

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Podcast Interview “Living With…”

I had the honor of being interviewed for the podcast, “Living With…” recently. Here is what this iTunes channel is all about (in Tom’s own words):  Description Living With… is about those living with cancer and other diseases or challenges. It’s a community of inspirational people who got some bad news, were dealt a terrible hand, a horrible diagnosis, which changed their lives forever. I have Myelodysplastic Syndrome (MDS), a progressive bone marrow disease which robs the body of its ability to produce blood cells and fight infection. For some reason the body stops making proper blood cells, leaving the body weak and vulnerable. Treatments include blood transfusions, drugs to boost blood cell production, and ultimately bone marrow transplant. My levels have declined considerably. I take drugs to keep my levels from declining even more, but no one knows how long they will work. I get routine blood tests to monitor my levels. I used to be an avid runner and have run several 5k, 10k, half & full marathons. I suffer from lack of energy and fatigue, but I’m able to work and do most things if I pace myself. Now, I am a walker, but I haven’t given up. I miss running, but I’m alive! The Living With Podcast is my way of bringing you interviews with inspirational people who are living with cancer, illness, and other challenges. I feel we can learn a lot from them, be inspired by them and ultimately live more meaningful and fulfilling lives. I hope you will listen to the podcast and will be entertained and inspired! Here is my interview: https://itunes.apple.com/us/podcast/living-with…episode-023/id975036684?i=347582559&mt=2 It’s a little bit long because, hey, it’s me – I was born talking – but you could listen to some, go take care of some stuff, then come back, etc….

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Chelan Man Triathlon Recap

Dan and I had so much fun at Chelan Man yesterday, it was AMAZING. I had always been intimidated by multi-sport races, the transitioning made me nervous. Not to mention I’ve never had a decent bicycle, or swim goggles, etc. We didn’t have the trendy triathlon gear, and we didn’t know what we were doing. We went into this race with two goals: to complete it, and have a blast along the way. But by going into this experience not worried if we’d look dumb with the wrong outfits, and nubby mountain bikes (borrowed at the last minute), by going just for fun, just to live and try something new, it removed all the pressure. Because it’s not about what other people think. It’s not about proving stuff, or worrying about trivial things. That race was for pure fun. To challenge myself and get out of my box, to try something new. As for the race itself, we fell to the back of our “wave” of swimmers to have some space, but just a few hundred yards from the shore Dan was kicked in the head and took on a bunch of water. It took us a bit to get his lungs cleared, and for him to get a good pace again. One of the volunteer lifeguards even tossed a frog floaty for us to share back and forth as we swam. We kept that for the duration of the swim leg. Yep, we were THAT bad at the race. But it was so funny! Dan and I were just laughing and swimming and enjoying every second.  From the swim we transitioned to the bike. It took a bit for me to get my rash guard, helmet, socks and shoes on, but once we both rehydrated we took off up…

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Reliving the Glory Days

Morning Friends! Dan and I have our triathlon this weekend. Remember that? Yikes. Have we been training? No, not really. We’ve ridden our bikes around the block. We’ve jumped in the sound a couple of times. And we jogged two miles last night. It’s almost as if we’ve forgotten that we’re not in our 20’s anymore. Fingers crossed for no injuries! This was all a harebrained idea to relive my glory days, the days before diagnosis. When I was diagnosed in 2010 I had completed two half marathons so far, and I wanted to take it further. In fact, I literally just went back in my emails to dial in this message from two weeks before I was diagnosed: Megs, In three weeks I’m off puddle jumping from Iceland, to Sweden, to Poland, to the United Arab Emirates and back. It’s a really quick trip though, only about three weeks. I’m really excited! Going to go see the Polish family and then down to the Middle East to see one of my best friends from college – quite the adventure! You’re tiny enough, you’d probably fit in my suitcase. 🙂 The Triathalon is in Lake Chelan, and it’s called The Chelan Man and there’s a lot of different options. It’s on the weekend of July 17th/18th. There are different races on Saturday and on Sunday. I think I want to try the Triathalon Sprint: http://www.chelanman.com/index.php?page_id=302 The Olympic Triathalon looks great too though – just really challenging. Might be really fun to do as a three person relay though – but at the same time I kinda want to try an entire three-leg course. People could stay at my place, or we can camp out on the riverfront at my parent’s house – that would be fun!!! Jet skiing to get us…

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The Post-Traumatic Stress of Cancer

As you guys can tell, I haven’t been posting much. I’ve been trying to soak up as much life as possible. There’s so much to see and do and experience. Half the time it’s just around my own neighborhood, but also, since I’ve completed the years of Chlorotoxin, I’m free to eat and drink whenever I want. I don’t have to administer medicine every four hours, and it’s freeing. It’s been weird, and a daze and a miracle and a gift. To feel human again, and “normal”. It took a few weeks to absorb it. I kept withholding food and water because the treatment protocol had been ingrained into my system. To be able to drink water whenever I want, all day every day, has been the most exciting thing. It’s not that the treatment protocol was so hard, necessarily, but to go without water for four to five hours a day when dehydration triggers seizures has certainly been a challenge over the past two years. It was debilitating. The only thing that I fear more than a seizure is a recurrence, just to put it in perspective. Honestly, I’m literally terrified every second of every day. I’m able to shove it off and distract myself and breathe and align myself with gratitude, but that when the night falls, when silence creeps across the threshold, my mind gets louder and louder. The cracks in my brain, the hot spots, the unique headaches, start talking. They nasally laugh and tell me in their jackal voices that I can think I’m winning, but they know something I don’t. They scoff and trip my walking mind. They tell me I’m dying, that everyone with this cancer dies. So I don’t sleep well. I read my books, my lids drag down. I turn off…

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