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 I live every day, that deep sadness. A life where I try to trick myself into happiness. "Hooray, I'm alive." And yes, of course, I should be happy that I'm alive, but what is this? I'm helping other people function in their own families. I'm helping mothers and fathers, born and unborn, and I have become this au pair for cancer patients, for cancer families, yet here I am, unable to have my own life. I hang on the edge of despair, worrying about my cancer friends, but I need to take care of myself and I hate that I can't compartmentalize. But I can't. So I just live sad. I live on anti-anxiety pills. I wonder how I'm even supposed to help because I'm nothing special, just a talker. I'm a not a specialist. I'm not a doctor. 

I've devoted myself so fully to help others, but I need to start focusing on what it means to be 35, without children, barely able to pay for our cancer treatments. I am an educated woman, with degrees, but I bought into what the doctors said about the fact that I would die immanently. So I've been in a mad dash to help others survive, but how am I going to live long term with my treatment responsibilities? I can't just take care of everyone else. And, how do I live my own life? And how do I make Danny's dreams come true? I feel so responsible. I feel overwhelmed. I feel sad. And I wonder what the point of this life is. I have watched others die for various reasons and its all confusing and messed up and it had nothing to do with working hard, or being a good person. I am not here right now because I'm somehow significantly better than anyone else on earth. 

So I just do my best. But what do you do when you know you can't give your husband children. That you've just isolated him. Danny should not be an old man without a family. Without children. Without that special, magical love. So yes, I am alive. I'm alive longer than I technically should have been, but, is this the life I would want for him? Never.

Here I am being grossly honest, and confused. What shall I do with my life? What will I be if not a mother? My heart breaks every day. I cry every day, whether its internal or literal. The worst thing is making others feel uncomfortable, so I try to hide it, dsguise my pain.

But it's the truth. And it hurts me to be real, but I will know in two weeks if my brain tumor is growing again or not, and sometimes I wonder, when I feel this despair, will it really matter? In the sliding door of life, what would be best for Dan?

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.

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!