Taking a moment to BREATHE 5.2.19

Taking a moment to BREATHE 5.2.19

I realized I feel less frenetic than I have in quite some time.

Though my diet shrank, whatever was causing the worst of the symptoms starting in mid-February seems to have calm down. I’m holding the current weight steady. My dad is…well, he’s hanging in there. They had to take him off the immunotherapy because his lungs overreacted to it and caused a ton of coughing. He’s now on prednisone! I keep warning him that he’s going to feel like he can climb Mt. Everest, but you know how that kind of advice goes over with parents. I have a doctor team in place, in case things get bad again.

But they saw his doctor early this morning and he seems hopeful that they can take care of my dad. I, of course, don’t trust any medical people easily. But he is highly recommended at SCCA and he’s really kind to my dad. That matters a lot.

I know that another shoe could drop.

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Traveling is so hard now 4.11.19

Traveling is so hard now 4.11.19

I never knew hunger before. Compared to what so many people around the world experience, I probably still don’t truly know hunger.

Most of the people in the worlds I’ve walked through don’t know hunger either.

All I know now is that hunger is something I live with on a daily basis. I wish I could explain what it’s like to be surrounded by so many people with SO much, while so much of my life gets stripped away.

While I sit in hunger while so many eat around me. While my belly rumbles and my mind gets fuzzy.

How do people do it? Live with hunger when it’s not even for a medical reason?

But simply because others are greedy?

The days of indulgence are ending. I’ve tried to warn my food friends that fancy food is out. I hope they can pivot fast enough to keep up with the zeitgeist.

I had a good doctor appointment yesterday but damn it’s still exhausting. I keep trying to figure out ways to get nutrients

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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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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 feel like an old lady 3.8.19

I feel like an old lady 3.8.19

I wish I could find the words to convey what it feels like to feel 90 years old on the inside. To wake up and wonder how I’m going to find the energy to get through the day, which I feel most Fridays, wrecked from the week. I can feel it at any time, though, depending on how much food I’ve eaten or if I’ve done too much in prior days.

I slept 12 hours last night. Which you’d think would be common for me. However, my biochemistry is such a mess that I often sleep like an old person. I wake up often and rarely get past 7 or 8 hours - and I realize that a lot of old people would say: that’s a long night! I know. I get it. I often sleep 5-6 hours per night. I rely on a LOT of herbal remedies to sleep beyond that. Now, for some people this is plenty! I have one family member who rarely gets sick and doesn’t need a lot of sleep.

I’m not one of those people and never have been. I used to be a very, very hyper person - most people who work in the culinary field are

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