When You Can't Bear it Alone

You guys are so sweet to me. Thank you for picking me up with the kind comments. I always feel awkward by how nice you all are, feeling like I don't deserve it. But it makes me feel incredibly special too - regardless of whether I feel like I don't deserve the praise. It took some time, but little by little I started feeling better. I did it by forcing myself to get out of the house and back into my walking group (other than today, but it's because I couldn't sleep last night and was afraid I might have a seizure). They always make me smile, fill me with hugs, and encourage me - as they do with everyone else in the group. It's more like a mutual appreciation and laughing club, that walks. In fact, I feel like I stole that description from one of the fabulous women in the group. So far I've been taking it up a notch by running to and from the walking group (other than accepting a ride home one day). Those stupid amazing endorphins really do change your mood. It's annoying but true. Aaaand convenient, I guess (she said begrudgingly). 

The MRI is set for this Saturday, with preliminary results on Monday. (I just go to the UW records department to get the results myself - no doctor.) I'm stressed, and not sleeping well, but I've laid off the anti-anxiety pills because I'm afraid I've become dependent in order to sleep. I never want to be dependent on anything. *isnt that ironic* 

As I type this, Dan is taking his three hour nap, he's currently scheduled for four days of 18 hours per day of work (trying to make up for the added expense of heading back to Germany unexpectedly for more treatments last month). Happily it's bookending the weekend so he can rest some in the middle. He's taking me to the MRI Saturday though, and it will be filmed for the upcoming documentary episode. They're also going to film on Monday when we head to get the results. I hesitated for a second when they asked to film, but in thinking about it I realized it wouldn't change anything whether they film it or not. At this point, nothing will change the outcome - other than a miracle. A miracle? But we wouldn't even know if a miracle occurred since we wouldn't have a before and after. And I don't even know what type of miracle would be best. Would the best miracle be that the tumor has not grown? Or is my path meant to teach me more? I don't know. I don't know what fate has in store for me. I have zero expectations. I still have anxiety because I'm scared. Not of dying - although that too - but of the memory of all the pain I've gone through - the brain surgeries especially. I honestly don't know if I can ever handle another brain surgery. I can't even imagine it. I don't want to. Three was enough.

Sweet dreams to all, I think I should head to bed early to see if I can magically get some extra rest. 

Since Dan's working so hard, I've been making him comfort food. Today I tried this recipe (using whole eggs - no dividing into whites, sub white cheddar for mozzarella, double the kale, and the addition of a bushel of beet greens):

http://www.myutensilcrock.com/2015/04/11/kale-and-egg-quiche-with-sweet-potato-crust/

It was a major hit!

Love you guys. Thank you for being my friends, my family. For cherishing me and for helping me bounce back when life is too hard for me to bear alone. You have no idea how much you help me. I am eternally grateful.

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.