The struggle to eat 3.15.19

The struggle to eat 3.15.19

I made some headway this week on the medical hunt. Of course, there is still so much to do. I don’t know why I’m still so nervous to post my medical case publicly. There’s nothing in there that I haven’t already shared. I don’t know. Maybe it’s the same reason I haven’t told people I’ve been writing in here. I’m enjoying last moments of feeling private.

I used to be SUCH a private person! My goodness. I looked very friendly and outgoing - and I am - but I was sly about not really letting people SEE me, the real me. We all do it to some extent - especially in this warped culture of ours where are not rewarded for being our unique selves.

It’s so maddening to watch the culture wars these days, knowing we are sliding downhill and there isn’t anything I can do to stem the damage - not while I”m so sick myself. So many good people

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5 year anniversary 3.14.19

5 year anniversary 3.14.19

Five years ago, today, I was getting my belly sliced open. I know that’s hard for people to hear. But it’s important that I share the truth of how I feel about what happened to me.

I was sliced opened and gutted.

I wish I had a dollar for every doctor that said “at least you’re alive.” Then, of course, I read accounts where doctors get cancer and are sobbing in the hospital saying “I didn’t know…I didn’t understand how it bad it is on this side.”

There are a few books by Dr. Mitchell Gaynor I really like - The Gene Therapy Plan is an excellent one for anyone that has a genetic cancer gene like myself. He is a super open-minded MD that worked in prestigious hospitals but also offered his patients really interesting therapies like

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White space 3.13.19

I went to a practitioner I really enjoy chatting with yesterday. I didn’t feel well at all. I’m still under the weather from the flu - it, of course, just compounds the weakness from not eating enough and all the other aches and pains. The reason I rarely mention having something like the flu is because, it’s so temporary! I’ve been dealing with some health issues for years now. Something that lasts a week, maybe two? Meh. That feels like a jog around the block to a marathon runner. Not even worth bringing up.

BUT I am bringing it up this time because it’s coming at a time when I’m already feeling very weak. Very tired. Very frustrated. Very annoyed with our fucked up medical system.

There are so many aspects of my existence that I can’t always get written down. One of them is the feeling I had yesterday before and during my practitioner appointment.

I told her that I’ve been struggling to stay connected to the outer world. My mind

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Have I lost eggs? 3.12.19

Have I lost eggs? 3.12.19

I don’t know if I can find the words to share my terror. I keep thinking about people who are told they only have a matter of months left. I think about what that would REALLY feel like. For the first time ever, I can step into that fear and see it from that perspective. When I empathize or try to understand someone’s position, I try to actually shift into the perspective of their world. I can’t always do it. Sometimes my emotions get in the way of trying to feel what THEY would be feeling.

I’ve never been this scared before. Ever.

I can’t lose eggs. I know I can get them in me still. But they used to be safer than they are now. What is going on inside of me?!?!?!?!?!?? What the FUCK? And why is it taking so damn long

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I got IV nutrients 3.7.19

I got IV nutrients 3.7.19

My body hurts. I didn’t want to write here. Then I started thinking about how these are the days that people don’t hear about. The days where I crawl into bed after an appointment - I got some tryptophan in my IV bag which makes me sleepy - put on some music and doze off.

So much of my life resembles an elderly person. I don’t know how to convey that to the doctors, that I’m so tired of not being able to eat enough food, so tired of not being believed that things are worsening.

I can tell what’s going on with my body. I can feel how things are going. I’ve been paying close attention to it since I was a young woman and had the inflammatory bowel disease.

I know when it’s not good. I remember in August 2013, I thought to myself: do I have cancer?

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I got cancer screening 3.6.19

I got cancer screening 3.6.19

I can see why I need to write here every day. I have at least three blog posts from today alone. I had an ovarian cancer screening check today at UW. It was my 5 year check! Because my blood levels of CA-125 were never raised when I had cancer, there is no point in checking them.

I did realized today after meeting with the doctor that no one has been checking my blood for any sort of tumor markers or other things that could indicate cancer is growing somewhere. Geezus. Yet another thing to add to the list of things I need to keep track of. Thankfully, my doctor is amazing and SHE thought to ask the questions that are part of HER job. Instead of me feeling like I constantly have to remember so many details. For example, my doctor’s office in California - last I checked - haven’t sent my labs to my other doc in Seattle despite me asking both offices. So now I have to waste energy following up with both. That’s a drop in the bucket compared to what I have to accomplish in a day.

So you’re probably wondering how my cancer screening turned out! Or maybe you’re not? Since I never had raised CA-125, all they do is give me a pelvic exam. I got the tushie checked too today! Which isn’t always possible if I’m feeling sore. She said she was glad she can check because

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I got out of the house 3.2.19

I had a weird day yesterday March 2nd. I’m writing this the next day - I have to be transparent about that - my brain can’t do the usual social media organizing, writing ahead, post this then blah blah blah. I don’t care about any of that anymore. Couldn’t care less about the number of followers, all that bullshit. I never really did. I just have to post and write and say what I need to post and write and say. It’s strange to me that people think I WOULD care.

My needs and wants are relatively simple these days: I want to be able to eat, shit and stay alive.

It was a decent day - I got out of bed and wanted to be in the sunshine so I went to Capitol Hill to get some vegan ice cream from Sugar Plum. It’s an awesome little plant-based dessert place. The young woman was super interesting to chat with.

When I’ve been cooped up and in bed for days, I’ll run a really basic errand to stay connected to the outer world. I never know when I’ll have energy so it makes it challenging to make plans with people. Plus engaging is tiring, so if I’m not in the mood to chat, I can run the errand, feel productive and go home. Sometimes I want a little conversation.

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