Wednesday, October 28, 2015

UCLA Tumor Board

Morning Guys!

Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time - it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn't mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend's house and upload the report. It took a total of four minutes! Talk about fast. That's way better than the several weeks it usually takes. It's not that the US mail takes that long, it's the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board.

Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It's disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Naïvely, I keep hoping that the tumor has shrunk, but no such luck.

If we're lucky, we should have an update on the status of my tumor from UCLA later today, but most likely it will be tomorrow. There are a lot of patients who will be looking for their results. Lots of anxious people. It's amazing how these results can completely change the trajectory of your life. Sometimes I feel like I'm living in a labyrinth. That I'm constantly standing in the front of two doorways. I never know what's behind them. I never know where I'm headed.

Monday, October 26, 2015


Here are the important things:

1. Surrounding FLAIR hyperintensity is unchanged.

2. There is no evidence of new areas of enhancement at the resection cite or elsewhere in the brain parenchyma.

3. A right frontal development venous anomoly is noted. (?)

4. Stable post surgical changes related to left parietal craniotomy and tumor resection without evidence of recurrent disease.

Looks good to us!!!! Time to jump for joy and make Dan a pack lunch for his second shift at work today. At least these long hours can keep his thoughts happy! Thank you for the love and support, and the ride to the hospital from my friend Jozann! What an angel she is. I told her to just drop me off but she wouldn't leave me by myself and stayed with us the entire time. Now THAT is a friend. You guys sure know how to support a girl.

Phew!!!! WOOOOEEEEE!!! Now I can stay up all night reading my book about the Lusitania disaster. Hey, we all gotta have ways to celebrate. Ha!

Final results from UCLA should be in a few weeks, but with no obvious regrow, I'm a happy girl!

Thursday, October 22, 2015

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):

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.

Tuesday, October 13, 2015

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?
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