Today is the colonoscopy yikes 6.20.19

Today is the colonoscopy yikes 6.20.19

I want to crawl out of my body. That’s the only way I can describe how I feel right now. I want to crawl out and have someone else do the rest of the day, like how those bratty families had someone else have their kids SATs (one day, we need to discuss what an awful head fuck that is for all those kids, how’s that for feeling competent and confident as they enter life? Even my own parents don’t have FAITH in me. Without even discussing classism).

I digress. As usual.

Lsat night actually went pretty well. I have my prep down pat OF COURSE. I’ve had probably 20 colonoscopies at this point in my life. My doctor’s office didn’t even bother me sending me instructions on how to do the prep or give their recommendation on what to do.

I’m too cheap to use the ones they offer. One of them is nearly $100!

Nope. I buy the bottle of Miralax for $13 and keep my little laxative pills year to year (I mean, do those REALLY expire?) and some ginger ale. Good to go.

I drank nearly the entire bottle of Miralax by 7:30. Usually they have you start the whole thing around 5pm. In my old life, I’d start it earlier so I could get to bed earlier. I’d also barely eat the day before. A lot of people make the mistake of eating a lot the day before which just makes life more difficult on prep day.

For anyone new to the world of colonoscopies, they aren’t that bad! You drink a bunch of stuff, clean out your system, and head on in. Once the prep is done, the whole thing is super simple.

But I woke up and nervous that I didn’t clean out well enough so I’m now drinking that glass in the photo above. I don’t have much

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Happy Father's Day 6.16.19

Happy Father's Day 6.16.19

I keep thinking that writing in here daily will end up feeling like a burden. I admit, I’m very tired today and didn’t initially feel like it.

But I decided to eat some broth and eggs before meeting a friend and typing here slows down my eating.

I have to eat a bowl of broth and a few lightly cooked eggs very, very slowly otherwise, it feels like there’s a traffic jam inside me.

I’m getting really tired of my diet. I forced myself to eat some vanilla coconut bliss and blueberry vegan ice cream. I’m trying not to think of it as pleasure food. I treat it like my green juices. Just get it down. I’ve got to get those calories in or my frame will change again in a matter of months.

I refuse to become bony. Plus, it’s just dangerous for me to keep losing weight.

I kept trying to tell my dad before the horrible week in the hospital when he couldn’t breathe. I said: for us, skinny is dangerous. Sigh.

He’s doing all right. The family came over for Father’s Day. My siblings and in-laws have been amazing about helping, they cooked everything and cleaned the entire kitchen.

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I'm wigging out 6.13.19

I'm wigging out 6.13.19

I couldn’t remember if I’d given myself an IV bag last night. It was completely blank. I knew I must have because I could feel it in my body.

But I couldn’t recall doing it that day. Do you know what helped me remember?

I remembered writing in here that I was in bed giving myself a bag. Then I started to remember other details.

I think I’m starting to get super scared about my colonoscopy next week.

You’d think it would get easier as I get further away from the original diagnosis.

But it doesn’t. The fear grows. What if it’s my turn next? I can’t help think.

My friend that had Stage 4 cancer last summer got bad news about her blood work. I wish they could track my blood work for ovarian cancer. But I never had increased CA-125 levels in the first place.

My dad is…I don’t know. He had a “good day” yesterday. He had to go to the hospital for his infusion and it took hours and hours. But mom was so glad he wasn’t having his nose bleeds (they have him on such high doses of blood thinners that he gets them now - they’ve got to control the clot problem since they can’t operate on him due to the breathing issues). And he wasn’t coughing as much either.

I said: this is what happens when you’re medically fragile, mom.

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The magic cloth is awesome 6.10.19

The magic cloth is awesome 6.10.19

I thought I understood a broken heart.

I really did. I thought I knew what it was like to pick up millions of shards scattered around farther than I would have thought they’d fly (how does glass do that by the way? My curiosity….).

I thought I knew how deep the pain could go. When losing one person.

Not even close. To having your heart broken by an entire community.

I have no idea if anyone is reading here.

I don’t think I want to know. Easier for me right now. Though, I have accepted that eventually I’ll need to engage again. Right now, I have to just spit content out, get it out of my mind, my heart, my soul.

If it all sits inside me, it will crush me.

At the very least, the burden is being carried by others along with me, instead of just me.

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My new doctor is awesome 6.7.19

My new doctor is awesome 6.7.19

I was worried about my face so last night, I emailed my new primary care doctor who is AMAZING. When I woke up late, for me, at 9 something, I had a message that they’d put me in a 10:45 appointment. I went in, we decided I need antibiotics.

On the way out, I asked the young woman at the front desk: should I stop at the drug store on the way home? You’re so much faster here than anyone else! She said: yep, the prescription should be there.

It was.

So, I think what’s been happening is when food gets stuck in corners or twisted sections of my intestines, it creates toxins. In Chinese Medicine, when there are these types of sores on the skin, it means the toxins are trying to get out. And in my new herbal book - YES I ACTUALLY READ SOME OF IT LAST NIGHT, it happened to open to a page on detox, and strangely enough I REMEMBER WHAT IT SAID, ok probably because I read like one paragraph BUT STILL I REMEMBERED IT - it said that the skin is usually the LAST place the body likes to get rid of toxins.

I really, really wish I had time to start experimenting with herbal concoctions.

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I heart being productive 6.2.19

I heart being productive 6.2.19

During the summer, when I was a kid, I’d create all kinds of activities for my younger siblings and cousins. There was my younger brother and sister, my four cousins who lived across the street and THEIR three cousins who lived kitty corner to both of us. The youngest were very small for much of my childhood, but I would still often be in charge of at least five or so kids.

I’d create haunted houses (wet cotton balls were supposed to be eyeballs - not bad for a 70s kid), camps, waterslide park (in the backyard), library (for years, every book in the house had fake library slots in the front), and my FAVORITE of ALL TIMES: SCHOOL.

I hosted “school” for my poor little kids the MOST often.

To this day, my cousin Danny, STILL gives me shit about making him do math in the summer time.

He’s done

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What is normal anyway? 5.31.19

What is normal anyway? 5.31.19

There was a woman standing on the corner of 15th yesterday. After acupuncture, I forced myself to stop and get some vegan ice cream. I know that sounds weird but I really do have to force myself to seek it out now.

The store bought brands make me gag. The two little shops on 15th rotate their flavors often enough that I try to buy a couple of pints when I’m nearby. High quality vegan ice cream is a good source of calories.

Definitely better than those awful meringue cookies from Trader Joe’s that I only eat because I like the crunch, which I miss desperately.

You know by now that I hate sitting in judgment of how people look and/or drawing conclusions about them based on their outsides.

But for the purposes of my story, I must describe her.

She was wearing

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I'm doing dangerous things (not on purpose) 5.27.19

I'm doing dangerous things (not on purpose) 5.27.19

I’m under a little stress over here.

Just a teeny weeny bit.

I don’t know how to describe it so I’ll share a story instead.

After coming home from the hospital and a brief respite with M where we tried to find me a restaurant that would give me JUST broth. The first place, they were total dicks about it. I try to be very patient and make it clear that I’m not asking because I’m on some trendy diet. I very carefully say: I actually lost organs to cancer so I can’t risk getting food stuck in there and need just plain broth.

No go. The (young male) server then added insult to injury and said: my friend had cancer and can still eat regular food.

I’m sure you can imagine how I felt after hearing THAT. I said a little bit testier: I’m sorry to hear about your friend but situation is completely different. I had 3 at once and lost several organs.

You’ll think I’m making this up but Megan will confirm his response: why are you comparing yourself to my friend? You shouldn’t do that.

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Edith is missing my dad 5.25.19

Edith is missing my dad 5.25.19

Let me tell you about Edith.

I got this plant at a nursery when I was 20 years old. I was trying to have a “grown up” home (hahahahahaaaaa whatever that means!). I’ve always been drawn to plants even though I still have not fulfilled my lifelong dream of having a garden.

She stayed with me through a lot of changes in my twenties. When I decided to move to New York City, I moved her to my parents where she has stayed ever since.

My dad has a whole system for watering her. As we often do, he and I developed an unspoken agreement that he would water her and care for her when I was gone. When I’d come home to visit, I’d trim her leaves, add more soil and sometimes give her some plant food.

Our plan must have worked because she is 28 years old this year!

Ever since his health worsened, she hasn’t been looking so good. I’ve been trying to water her regularly, but her leaves keep turning brown. Last night, even though her soil was moist, her leaves were drooping and facing one direction. They were all leaning toward the kitchen and away from the window.

I think she misses my dad.

It’s been a really rough week.

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I am very tired today 5.15.19

I am very tired today 5.15.19

I’m going to have to invent better blog titles.

I feel like I’ve been dragged under a bus and then rolled down a long hill and then landed on concrete.

One friend was asking me to describe what the fatigue is like. The best I could come up with is that feeling you get when you know the flu is coming. Or, the feeling when the flu is gone but you still feel like you can’t do much. The second one is probably more accurate. It’s not full-on flu, it’s that heavy feeling where everything sounds hard. Basic tasks sound near impossible.

I know I’ve been ranting in here lately. I don’t want this to be all about my rants. I really would like to get to some gorgeous writing! Share some more life stories! Write some reviews on products! Organize my nutrition information!

So many thing!

Today, I will just try to get through the day. No matter how dark my curtains are, I can’t seem to sleep well in the bright mornings.

I’m trying to write coherent thoughts right now because

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I can't wait to decorate 5.10.19

I can't wait to decorate 5.10.19

I gave myself 3 liters of fluids yesterday up until about 3/4am.

I’m giving myself one right now.

I’m dehydrating very, very quickly these days.

AND I started the fluticasone on Monday.

I’m trying not to panic. My nurses say they have patients that get 3-4 bags per day so I know you can live like that.

But what the FUUUUUUCCCCKKKKK is happening to me? Why are so many things worsening? How can I stop them from worsening better? Is it even possible to improve hydration and gut issues? Am I dreaming?

Or, do I rely on my old belief system that the body WANTS to heal, and given the right conditions and interventions, it WILL heal.

If only they hadn’t gutted me so badly. Geography and scar tissue are different beasts than inflammation or auto-immune problems. Nerve damage…

Ok, I’m not going down that road today!!

Can you feel how frenetic I was in my post yesterday? That’s partly the medication. Like I need to be jacked up at ALL. I’ve always been drawn to depressants, never stimulants. Caffeine and cocaine have never had any appeal to me.

Mellow me out, man!

(Can you tell I started my weekend already?)

OMG this week was SO bananas!

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I like feeling really strong 4.28.19

I like feeling really strong 4.28.19

I wear an extra small now.

I loathe even writing that.

It’s weird to have something that so many people want so badly - or think they want - and to hate it.

I opened this Athleta catalogue - I’m not sure how I even started receiving it since I never shop there - but I like looking through the workout clothes. I’ve got to let go of the past and give away - no THROW AWAY, they are sooooo old - my old workout clothes. The pants literally slide off my hips now! What the fuck!? I’ve had hips since I was 16 and no amount of healthy eating or workouts has changed that.

Until now.

Now that “society” is finally embracing super strong looking women like the ones in this photo - and women of color woot! - I’m turning into this frail little lady. ARRRRGGGGHHHH! It’s like seeing gluten-free waffle cones at a vegan ice cream place - all the foods I love and can eat are EVERYWHERE and I can NOT EAT THEM.

My timing sucks.

As I’ve mentioned in here before, I’ve never aspired to be waif-y thin. I’m trying to remember when my ideas around that started forming. I feel really lucky I didn’t obsess about my body shape much when I was young.

I was WAY more concerned with

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My PICC line is annoying 4.20.19

My PICC line is annoying 4.20.19

Some days I don’t feel like writing in here.

Today is one of them.

But I like the challenge of writing every day and I think my writing has gotten a tiny bit tighter since the first few weeks I started here. It’s been pretty bad so that’s not saying much! I need more time to edit them - but with my health the way it is, I’m not sure I have the bandwidth for a lot of necessary editing. I can’t care about that. It feels so good though to share more of my story in a place that will allow me to live on no matter what happens to me!

The other part of my story from Thursday night is that my PICC line bandage popped open right before I left for the ballet.

Since this is it’s own post, I chose not to include it in yesterday’s story.

Every day, there’s so much going on! My head is spinning. My dad is so weak right now - it’s so hard to see him like this but that again, deserves it’s own post. I’m still processing everything that is happening with him.

Back to the bandage.

A PICC line

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I am scared for TPN 4.14.19

I am scared for TPN 4.14.19

I don’t take a lot of photos when the pain is really bad. I also don’t like taking a lot of photos when my weight is down. It’s sunk down several times over the last couple of years but I managed to pull it back up.

The reason I took all those professional photos last year was because I liked my weight then and worried I wouldn’t be able to keep it there.

This could change when I’m on TPN (Total parenteral nutrition “is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.” - Google)

One of my registered dietitian friends - I have a lot of them because I’ve been in the field for so many years - has been recommending TPN for a long time because it bypasses the gut and gives nutrients entirely through the IV to the blood.

It has sounded terrifying for the past year or so when she has been advocating for it. The main risk is liver toxicity from long-term use. It could mean blowing out my PICC line more often as well. I’m sure there are other risks, but I don’t do a lot of medical research on the Internet anymore.

For two reasons:

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The long week is over 4.12.19

The long week is over 4.12.19

I’m definitely feeling better mentally than I have in awhile. We got best case scenario news about my dad - though he is far from out of the woods - which is a huge relief. I can’t think straight when I’m worried about him! It’s not just my dad that I’m worried about - also, he is a main caregiver and of course, we share the Lynch so if he is struggling…I can’t help but wonder: is that my future?

It’s nerve-wracking to live with a ticking time bomb buried in my DNA. People get so excited that I’ve made it five years since surgery. But the longer I go without another cancer, the more nervous I get. When will it happen again? What will it be? Will they catch it in time?

On top of that, not being able to eat much sends me down a more urgent anxiety spiral.

People wonder all the time how I handle all of this.

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Food scares me 4.8.19

Food scares me 4.8.19

There was a guy eating French fries and drinking a milkshake near my friend and I while we got tea at Whole Foods yesterday. He did it so casually. There was another woman eating her salad while staring at her phone. I can’t help but stare.

I’m still thinking about their casual eating long after they probably have.

What is it like to not be able to eat hardly anything? I’m sure people wonder. I haven’t shared much about it mostly because it’s incredibly painful.

For anyone new to my life, I used to be a cooking teacher and nutrition educator. I spent years developing recipes, menus, and curriculum for adults and kids.

I used to spend all day thinking about food, buying it, preparing it, teaching it, and eating it.

Now? I spend all day thinking about the few foods I can eat and which ones I can get away with it.

The saddest part about all this is that I actually love healthy food.

I grew up in a mostly meat and potatoes household like most Americans in the 70s and 80s. My dad has always been a health-nut so we moved over to chicken and fish earlier than most. His parents - my grandparents - were into juicing. My Bubby, his mom and the woman we all got the Lynch Syndrome from (thanks Bubby!) made her own yogurt.

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Something is not right 4.2.19

Something is not right 4.2.19

The pain was bad last night. I hate when the pain is bad throughout the night. I wake up a lot and don’t sleep well. I tried eating four eggs yesterday and it did NOT go well. That’s the first time I’ve tried to eat four eggs at in one day since before Feb 15 or thereabouts. That’s when I left for San Diego.

I thought since because I had an extra visceral massage on Sunday that maybe I could get away with it. Also, I was hungry! I was super hungry yesterday which is always a good sign. Today, no appetite. Don’t want to put anything in my stomach. I should have done two bags of IV fluids yesterday - that would have helped - but I ran out of tubing and had only one left. I wanted to save it for TODAY’S visceral massage with Caroline. We discovered that if I give myself a bag while she works on my belly then she’s able to move my tissue more easily and open things up.

Visceral massage, if you’re wondering, is when specially trained massage therapists move the intestines around by massaging the belly and the back. It can be very subtle work - they are trained to know how to “pull apart” the intestines that are sticking together most often due

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I went to ER 3.11.19

I went to ER 3.11.19

It’s hard for me to type. My eyes don’t want to stay open. But these are always the most interesting in my mind. When my body feels pinned down by a virus, pain, too little food, the most interesting thoughts come through. I rarely try to record in the moment. I want to try even if what I’m saying doesn’t make sense. Worthy experiment.

I’m getting nervous for sure. I haven’t eaten eggs in days. I tried the elemental nutrition powder yesterday and my stomach went a little bananas after. Could have been virus. Hard to say at this point. I usually don’t introduce multiple products, not projects, at once. But it’s fairly crucial that I get as much in this body as possible.

So last night, I started having a coughing fit and was struggling to breathe. In my old life, I would have made some tea and gone to bed. But now, I get scared

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Can I do it? 3.10.19

Can I do it? 3.10.19

I have some sort of bug. It’s turning into a hacking cough. I hate being like this. I hate being a sick person. I Hate not feeling strong. I hate not working. I hate begging for help. I hate that my family is in so much denial.

Am I also in denial? I launch these projects and make goals - is it totally futile? With this cough / bug, I can’t do my evening routine which means no eggs. How many weeks can I do this? Should I go to the ER and get admitted so I can get TPN (nutrition through my IV line)? I hate having to make all these serious decisions - back and forth back and forth in my mind. How sick are the doctors going to let me get before they will step in to help?

My nurses say that they often wait until people are near death before covering things like TPN! Oh, and I’d need to fail a feeding tube as well! I can’t IMAGINE the Nestle shit they put in the tube feeding - and I’d still need to get that out of my intestines! The TPN bypasses the gut. But there is not good data for long-term use of TPN and my gut could just shut down

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