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.
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.
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):
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!
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. I had a blast talking with Tom, and it was really fun to listen to his other podcasts and hear other people's stories. It is a privilege to share my story with others. It is a privilege that I am here on this earth. I am humbled that Tom found my story to be one that would be a benefit to the community.
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 the hill. The bike felt really weird though, and right as I pumped up to the top, my tire popped off. No joke! I called to the spectators and said, "Help, I think my chain or something fell off!" A guy came running and then another guy and all of a sudden it felt like I was in a Nascar pitstop, power tools whizzing, within (I swear) two minutes I was back on the saddle headed away. Rolling away I was low fiving spectators and hollering thank yous. I could hear Dan behind me chuckling.
The bike ride was probably the most fun; Dan pulled up the rear and let me set the pace. There were water stations along the way and I would roll up slow and tease to tell them I was coming through the car wash, then they would spray me with a hose, or bottled water. It felt so good! There's nothing better to wake you up than being doused with icy water on a hundred degree day. Quite shocking, but it'll certainly cool you off.
When we transitioned from biking to running, we racked our bikes, drank some more water and started running, but almost immediately people started hollering because we were running the wrong direction. Ha! We are the worst triathletes! We might as well have been Abbott and Costello. The run was a little tough because the heat had really climbed. The route was out along the highway, the heat swirling up from the asphalt. There were a few times when I worried I might be in seizure danger zone, but Dan helped me take my rash guard off, doused it with cold water, then draped it over my shoulders. My icy cool cape really did save the day.
You'll see below that my mom took lots of pictures. My parents are so wonderful. They came with us to the race, and cheered us on during every leg. It was just shy of a hundred degrees very quickly and to have my parents there cheering, and laughing with us, was a lot of fun. The day was one of my favorites, one that will go down in the record books.
I can't believe we did it. I can't believe how hard we laughed (mostly at ourselves). It just goes to show that everything in life is really fun, even when you don't know what you're doing. Even if there are literal obstacles. Dan was legitimately kicked in the head. My tire popped off. We ran off in the wrong direction, and yet it was one of the most fun days of my life.
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:
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 into the competitive mood of the race?!?! -Jess
As you can imagine, I never did get to take part in Chelan Man in 2010, and the trip was cancelled. My life, from two weeks on, was forever changed. It's bitter sweet to try and compete in this race (although I use the term "compete" lightly), because it reminds me of my old life. My carefree life. That ignorance that allowed me to think that my problems were important. It's going to be fun, and hard. It's supposed to be 97 degrees as a high on race day. Dan is doing it with me, though, and we'll just have a lot of water on hand, and seizure medicine as a given. This will be tricky when sun, dehydration, stress, and heat all trigger seizures, but it's something I feel compelled to do. To live my life and try to get back on track. To be the person I once was, but better. Jess 2.0, new and improved.
I'll post pictures next week, if I survive that is. Ha! Of course I will, I've navigated tougher waters that's for sure.
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 the lamp, I sigh that deep sigh, and I start to drift. And just between thoughts and fantasy, my body jerks and tenses. My pores prickle and sweat. My heart races, my head spins with delirium. I think of everything wrong that I've eaten, every supplement I forgot to take that day. I kick myself for not exercising, for not taking my care more seriously. Because the truth is that I'm not as diligent as I used to be. My diet is not on point, I am not the machine I once was. I want to live, but at the same time I want to LIVE.
I don't think I'm alone in the late night self loathing. I don't think I'm alone in the late night overthinking. I wish it was something I could turn off, and boy do I try, but it's in my psyche. It is who I was from the time I was in the womb. It's in my core, and as much as I meditate, as much has I repeat my mantra, "Thank you. Thank you. Thank you." It's not enough, this doubt, this overactive mind is on a cellular level.
So I live, and I ride my bike, and go for walks with my walking group. I garden, and laugh with friends, and play with our dog, and snuggle with my cat. I paint, and I continue to be awe of the fortune of my life, my health. But deep down, I continue to be scared. My body has memories of pain, a deep sadness, the fear of death, the throwback of when I was diagnosed, when I was awake and they were cutting into my brain. The flashbacks to the recovery, relearning how to read and use a knife. I feel great, I love my life, but I have post-traumatic stress that I live with, and can't seem to fix. And the fear is that I don't know if I ever will.
Thank you to the sweetheart who anonymously commented on the blog on the 4th of July weekend wishing us a wonderful holiday. It made me feel incredibly special. We went up to Friday Harbor our hometown to spend time with friends and family. It was magical. We even got out on a friend's boat to do some fishing and were surrounded by a pod of Orca whales. It is not lost on me that I was raised on a piece of heaven. Friday Harbor is a panacea to my soul.