I lost my green fleece 5.17.19

I looked for my green fleece for hours before realizing I already packed it. And yes I bring my own toilet paper with me. What do you think I am, a rookie!? ;)

I looked for my green fleece for hours before realizing I already packed it. And yes I bring my own toilet paper with me. What do you think I am, a rookie!? ;)

I have almost no short term memory.

I don’t talk about this much. But it’s a huge factor in my day-to-day experience.

A lot of why moving out of this space sounds daunting is because I’ve finally figured out a system to compensate for the memory loss, which is probably due to massive amounts of chemo.

Most ovarian cancer patients get 6 weeks of carboplatin and taxol.

I had 18 doses of taxol.

One gyn oncologist in Seattle he thought that was an unnecessary protocol.

We’ll get to that another day.

For now, I deal with the loss. Every day. I have to put everything back in it’s “home” or I can’t find it again.

Fast forward to packing yesterday. I’m supposed to leave soon but I’m so dedicated to writing in here, I’m making sure I get it done before I head out! Thank goodness it’s not raining. Have I told you how bad my vision is? It’s always been bad, and especially so in the rain.

I see better with contacts than glasses but because both sides are going now (I’ve been -6.25 which means someone with excellent vision can see something at 600 feet that I can see at 20 - and yes, that’s pretty bad), I rely on glasses.

I regret not getting lasix in my 30s now, but that’s also for another day.

Didn’t I luck out in the DNA department! Whenever I meet Jewish people that have babies with non-Jewish people, I’m like: good job mixing up the gene pool! Keep at it!

Back to my short term memory loss.

See how that happens? This is why reading and writing is so challenging now. When I’m reading a novel, I’ll forget the first few lines I just read by the time I get to the bottom of the page. If it’s a light enough topic or book, it doesn’t matter. I can get through the content now. I have trouble immersing myself in novels now but that’s because of other reasons. I feel such stress, letting go long enough to get lost in a story sounds…dangerous. What if I miss something important? What if I don’t hear the phone and it’s a doctor I’ve been trying to reach? (Hahahaa, as if doctors call us anymore - I love my new ones because they actually EMAIL me back which is amazing. But phone calls from doctors? I can’t remember the last time I spoke to one on the phone.)

But the short term memory loss impacts my entire day.

I have to leave notes out to remind myself to wash my hair! I do! I have to wash my hair in the sink or bent over in the shower so it’s not a daily habit.

Anything that’s a non-daily habit often gets forgotten. My massage therapist is trying me to have “off” days with my castor oil packs due to the mottling on my stomach.

But I told her, the habit is now immersed in my long routine. If I stop for a few days or a week like she suggested, I’m concerned I won’t bring it back in.

I have notes to remind myself to take new supplements or medications. My estrogen patch starts to itch around the time I have to change it but if it didn’t, I’d need notes in a LOT of spots to remember to change that since it’s on my back.

I don’t have the same “mind chatter” about daily tasks that I had before.

Oh, I should disclose that I had an extraordinary memory before. I could memorize what entire pages of text and my own notes before tests without much studying. I think I mentioned that you could give me driving directions verbally in a city I barely knew and I’d remember them. I’m actually a visual learner, I try to get into audio books but then I start thinking about something and stop listening - I tested this in college because my roommate, Shannon could listen to an entire lecture and remember all of it - I tried that one day and didn’t remember shit. I have to write it down - even if I don’t look at it again, I have to make it visual at least once. But driving and navigating was something I used to do easily. Sometimes, I could just “feel” which direction to go when lost. Not sure I could do that again! Thanks to GPS, I don’t need to!

So, last night, I’m looking everywhere for my fleece coat I found at the Nordstrom Rack. I LOVE IT. It’s my favorite color AND it was on sale!?!?!?!?

I don’t get too upset when I lose things these days.

Once you’ve lost a bunch of organs, things like a coat seems pretty insignificant. But I was a little upset. Did I leave it at a doctor’s office? In someone’s car? Wouldn’t they let me know? I almost posted on Facebook: when did you see me wearing my fleece coat last?

That’s the problem. I can’t even run through my mind and think about it where it MIGHT be. I literally can’t remember the past week unless I look at my calendar.

Sometimes people ask me something simple like: how have you been lately?

And I have to sit and really think. It’s pretty scary when the mind goes completely blank.

I’m sure it’s hard to imagine. I can’t even imagine it and I’m experiencing it! It’s terrifying when I’m trying to manage so many details of my medical case. I write a LOT of notes to myself. I’ve always needed some visual reminders for basic things.

But now. I will hide chocolate from myself which totally works now. Unless I open that drawer again, I completely forget that it exists.

This part isn’t easy to share but I’m sure people will wonder. Yes, I have trouble remembering new friendships. Unless the other person works at the friendship, I struggle to remember to stay in touch. I try really, really hard because I LOVE new friendships. If they don’t know or are unwilling to learn about disability and what it’s like for someone like me, it just won’t last. This is why there is a lot of comfort being around people who have known me for a long time here in Seattle.

People have to keep their expectations low with me now. This is very hard on me. I pride myself on being an excellent friend. It’s a really important part of my identity. I will often write notes to contact people because otherwise, it won’t happen. If I start a text thread and the messages get pushed down due to interaction with my regulars (bestie, nephew, etc.), then I fuck up and don’t write back in a timely manner.

One of the reasons I prefer not having a lot of clothes now is that I CAN’T REMEMBER WHAT I OWN. I just found the cutest sweatshirt (I remember exactly where I bought it and when - Portland Macy’s when I was at a food conference there in 2010) that I completely forgot I owned. I have to leave them out in front of me - the same goes for my medication and other things, i have to be able to VIEW them - or I’ll completely forget they exist.

When I was at a doctor appointment last week, I left my PURSE in the lobby with my drink. The only reason i discovered it was missing a good 10-15 minutes later was because I wanted to take a sip of my drink. My drivers are all slowly realizing how serious the impairment is. I don’t even remember that I have to tell them!

When it comes to the more serious things like researching my medical case, I REALLY struggle. I used to be able to devour scientific information. My master’s thesis is a literature review which means I researched all of the studies I could find on soy and breast cancer (it was the 90s!). Any old skills or knowledge is imbedded in my brain, THANK GOODNESS. But it’s almost near impossible for me to absorb complicated new information.

I have this book on adrenal fatigue that I keep trying to read. But then I forget what I wrote. I long for the time and bandwidth to really sit and write it down. Or type it into a document that I can print and then review when I’m on the toilet or waiting at the doctor’s office.

It never happens. So much is happening that researching my own case is near impossible. Unfortunately, I didn’t have a lot of people sign up to help with research on my volunteer form. BUT thankfully, I have a few RD friends who will banter with me or do research on my behalf. They are rock stars!

I almost never google things like the mottling, mostly because I’m afraid of what I’ll read. I’m also nervous that I’ll read something that will be too suggestible for my mind. We are powerful creatures! When we believe something to be true, it can impact our physical health.

For anyone that doesn’t believe this, try and believe ME. I remember when they started telling me all the scary side effects of one of the chemo drugs, taxol. I started to tell her: no, no, don’t tell me!! She said she had to tell me.

I had the side effects so bad that they had to hospitalize me for the rest of my treatment appointments.

I don’t MEAN to have that happen. But it can.

There was a case that I haven’t been able to find through my cursory research that a doctor on CNN mentioned when I lived in California (THIS I remember). She said someone told the patient that they had cancer and had six months to live.

The person died six months later.

They found out later that the patient never had cancer.

This is why mindset is SO important when things are going rough. This is why I share SO much of my story so that I’m getting encouragement and belief and faith in my ability to get through it.

This is why so much of America is a mess.

We believe things so easily.

It’s the way humans are hard-wired.

So that leaves me without the ability to do my own research. I’m afraid I’ll forget the important things and remember something terrifying that I don’t really need to know.

It’s a maddening way to live.

After tearing about my car trunk (did I already put it in the car? I can’t remember. Did I leave it with my parents coats and did they move it somewhere? They are in bed), something finally tugged at my mind. I go downstairs and find it in a bag that was sitting in the hallway. I have to leave everything out in a really annoying part of the house, or I’m afraid I’ll forget to put it in the car.

I have notes all around my suitcase to remind me to pack things I had to use last night and this morning. Don’t forget hormones! Don’t forget back roller! Don’t forget! Don’t forget! Don’t FORGET!

But I will.

Someone recently sent me a job description for a health writer. I know they were trying to help but it sent me into a tailspin. Some family members still aren’t getting that I’m not the same person I was before and working for an employer would cause so much stress. Even if they’re super cool which was my last client in 2016! She was SO patient with me as she waited on curriculum I’d committed to writing for her organization.

I was a mess. It was a really cool project (that we’ve discussed modifying and sharing for teen activists, I weirdly wrote it before the election on how to use their smartphones for advocacy work - very different than the food education work I’ve done in the past and not exactly what she hired me for but it turned out to be something that could be replicated in any classroom so….) that I was excited to work on.

It was too stressful. I didn’t charge her the last bit of the money owed because I took several months longer to submit it than we originally agreed upon.

Anyway, this friend was trying to help by sending me the health writer job description. But as I’m reading it, I realize: I can’t even do this. I can’t do research on health information and then chunk it down into a short, snappy piece for the laymen.

I’d need better cognitive function to do that. So it’s not even a stress thing.

I’ve had to slowly learn to accept that “chemo brain” for me may likely be a permanent thing. I’m not as bad as I was! I remember when my massage therapist was in town and emailed me which parking spot to park in. I remembered the number while I was pulling into the parking lot! That was about a year ago.

For four years, it was so bad that you could tell me a number and then poof! It’s gone.

And for anyone unfamiliar with memory and neurology, without a short term memory, guess what happens with my long-term memory?

Those short-term memories I’m NOT making don’t ever make it over to the long-term section of my brain.

That’s right. I barely remember the last five years. It’s in large part why I like writing in here and like social media. It records my life in a way that I can’t record in my own brain.

At least, I EXIST in here. That’s such a hard part of not having the short term memory. I struggle already with making sense of who I’ve become. But when I’m constantly having things fall right through a sieve in my brain, I can’t put the pieces of myself back together very well.

Who am I? Hmmmmmm…wait what was I thinking about?

The good news from all this is that the art can come through much easier now. I think I had TOO much going on in my short term memory section for many years. I used to juggle multiple clients and regular gigs - I could have seven or eight “tracks” in my mind. I could switch from one to the next without an issue. Once I got to about ten, then I’d start to struggle.

When I was working in San Diego, I realized I could have only three tracks, tops. And THAT was a struggle. I got clipboards and put them on my wall where I kept lists that I could constantly check on.

I’ve had to move my short term memory OUTSIDE of my brain and literally write it on a wall. For the last few years, I had notes all over my walls. It’s partly why I was embarrassed to have people over. I looked like a mad woman. Which I am, but I’d rather not have that part of my life out in the world.

I had sections for my medical case, activist ideas, posts, blog ideas, so many things. I’ve now created new systems where I write them down and then bucket them. If they aren’t used within a few weeks, then they go into a permanent pile for podcast ideas, video concepts, blog posts. It’s taken me thirty years to develop this system!

It’s not perfect. But I’m not staring at a zillion ideas or reminders. I move them quickly now so I don’t get stressed out by the massive amounts of notes staring at me. I still ignore a LOT of them. So I have to get clever. If something is important, I’ll tape it to the toilet or to the top of the sink (never sticks). For the most part, though, I’ve figured out the system.

Shit, I have to finish getting ready to go! I’m supposed to leave in 40 minutes so I avoid Portland traffic!

It all sounds so hard. Everything sounds hard when I’m tired. I only got about 5 hours of sleep last night. I didn’t do my heavy herbal cocktail and of course, woke up early and never fell back asleep. I force myself to just lie there and not look at my phone, in the hopes that I will drift off. I think I started to but then something jolted me awake.

I’ve got to finish getting ready!

I found the fleece coat! I have two other coats in the car. I don’t like being cold anymore. I still run warmer than most people. But the menopause and fucked up biochemistry makes me colder than I’ve ever been before. I’m sure losing so much fat tissue doesn’t help either.

At least with the car, I can just throw everything I MIGHT need in. It feels way less stressful than going on a plane. I might try and stop in Vancouver to see friends on the way back on Sunday which will be a fun detour too.

My nephew happens to be racing for crew in Vancouver (WA) this weekend. But his race was at 8:30am this morning so no-go on watching him race. Dang! Would have been so fun! I like to poke fun and tell him that I wish I could go by in another boat and yell: you’re the best honey, I love you so much, you’re doing such a great job! Isn’t he wonderful everyone! Like that mom on The Goldbergs. He just rolled his eyes and said: yeah I would love that SO much. But he smiled as he said it.

I can’t believe they’re growing up so fast. I’m not even a parent but I’ve been having panicky feelings about empty nest! How do people let their kids go into the world? So far away for college? Now at least you can Facetime and text all the time. But in the old days, we just took off! Bye!

I want them to be healthier, functional human beings in the world. So I reign in the urge to run after them yelling like Mrs. Goldberg. But I want to!

I’m so proud of them. They are such precious human beings and it’s such an honor to be their auntie. I lucked out in that department for sure.

see how I get discrated by my own mind? ok can’t type because there is an animal on my lap who gets jealous of my computer. can’t see what i’m tryping.

sdmuch love,f

jules