Tuesday, September 29, 2015

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 in Poland 25-30 years ago for a hemp symposium. She is the matriarch of the family. Once he could prove our lineage (I mean, come on, who just shows up claiming to be family), we have been loved and included into the family ever since. They literally brought him into the home and brought more and more of the family to introduce the American family member that popped up. It was a miracle of kindness, and a blessing in our lives. To have family that cares for us, and we for them, and they literally live on the other side of the world. Thankfully there's iPhones and Facebook so we can text and talk and always be in contact. 

Each family member is perfect, and I just wish we lived closer. But thankfully, my treatment in Germany isn't too far away from my family. It's a gift that I will be going back to Duderstadt for the rest of my life for treatment. It will give me the excuse to see the family often, to grow with them, to stay close and connected. 

Okay, time for another infusion. It makes me tired, and I'm already sick, but I love these treatments because I know they heal my body. I have 100% confidence in this immunotherapy and of my doctor. 

Hope all is well back home. Sending lots, and lots of love! 

I may be sick right now, but my family is an elixir that fills my soul with happiness. Of course, I couldn't leave the family without a braid of their fresh garlic. I've been eating it ever since. Everyone knows garlic is the ultimate cure all. Visiting with my Polish fam was like being home. Not a lot of people get to say that, that they have two homes filled with love and they're halfway around the world. I am overwhelmed by the fortunate life I get to live. The amazing people in my life. 

Now it's time to get bundled up for a walk to the clinic for my infusion. Wish me luck. Hopefully my advancing sickness won't delay treatment.

Friday, September 18, 2015

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! 

I could live like this. Bikes everywhere, birds, boats, walkers, salty air, a calmness. It's everything I could have dreamed of. When we moved from Seattle to Edmonds we fell in love with the slower pace of life. The irony is that Dordrecht makes Edmonds feel like Gotham.

Just a few hours ago we watched, from our balcony, a newly married couple go by. Apparently, it is tradition that the groom from the ceremony peddles his new wife to the celebration. And just as I type this the church bells chime. Dordrecht couldn't be more magical!

Sunday, September 13, 2015

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 live life big. I laugh and jump and dance (albeit ridiculously), but I'm fearful too. I may be the happiest yet most terrified person on Earth. I'm scared every single day that the mass in my brain will grow. I'm scared every single day that I may be one of the ones who die young and I won't be able to stop it. I'm scared every single day I'm eating the wrong thing, drinking the wrong thing, putting the wrong product on my body (the toxins), that I'm too near the wifi, that our water has too much crap in it, that I'm not exercising enough or that I'm exercising too much. But what permeates the most in each moment is that I'm scared every single day that I will have a seizure. And now, to add to the list, I'm scared that I'm going to be woken up mid-seizure. It's like waking up to the fire alarm, but it's not a drill, there's a literal fire in your brain, and it's surging through your body. And when it's over, you're ravaged. You're wiped. You're almost ruined, but you know you have to rebuild. And with any disaster, it's the aftermath that takes the most work.

The irony of everything is that I was jolted out of bed with that nasty seizure on the morning I was to go to a Seahawks practice. The day I was going to meet coach Pete Carroll. Dan was temped to cancel because I wasn't making sense and my face was droopy, but I begged, and I pleaded, and he tilted his head, squinting, and said okay. The unfortunate part is that one major side effect of my seizures (although I'll bet it's common with many) is memory loss for about 24-36 hours. So, being the stubborn cuss that I am, not wanting to miss out on the opportunity, or wait one more day to meet Coach, that I will have to work very hard to remember our special time at the Seahawks practice. The whole day was surreal. I shook hands with Bobby Wagner. (What? Yep, that happened. He may be my new favorite.) I watched Beast Mode get stretched out right in front of me. He was talking - I saw it. I watched Sherman bounce around from crew to crew. I noticed Russell working on the QB stuff, I could see the smoke drafting from his ears with the laser focus. I chatted with the Seahawks crew, and laughed. I tried to push one of the things that the linemen push, the metal things with the pads that simulate the opponents, and I'm pretty sure I moved it a millimeter. When the practice was over we talked with Coach which was awesome! There's an amazing familial vibe, a camaraderie. Everyone was jovial, but dialed in. I joked about how I wanted so badly to run out there and jump in, to race anyone who was willing, but of course I stayed on the sidelines. We were the only onlookers that weren't part of the team or media. It felt crazy, and profound. I have a deep respect and love for the way that Coach Carroll handles the sport, the players, and life. He practices with the players, running around, sweating like the rest of them. He believes everyone has the chance at greatness, his motto, "Always compete."

The older I get, and especially since I was diagnosed, I don't enjoy competing as much with others (maybe it's because with cancer, we can't all win and it's not our fault - it's often out of our control), but my internal competitiveness has never gone away. It's what helped me strive to learn the alphabet, and talk, and read, and write again. It's how I was able to start walking as soon as possible, aided by Dan, and my friends and family. I always knew I could do better, that I could do more. And I still look to challenge myself (even if it turns into a hysterical near disaster like the recent triathlon). If life was a drink I would gorge myself, while trying to jumprope and cook dinner and garden and read a book and run in circles. I want to do it all as much as I can. But in order to recover from all that madness first, I'll have to get over my seizure fears, and just get some sleep.

The lair.
Wait, what's that? Oh ya, we're here with Pete. 
An O'Carroll family photo. 
My, I can't believe I'm at his press conference face. As he walked away, he jokingly said, "And any further questions to you Dan and Jess?" Ha! Good one Coach. Yep, Pete Carroll knows our names.
The TSA checking the busses, and gear so that the team can just roll up to the plane. They were flying out to St. Luis when we rapped up. Go Hawks!