I had an appointment with my primary doctor who I love. My driver, who is amazing, said she feels like I seem a bit sharper these days, which is impressive given how much is going on.
But I’ve got a better handle on the calories.
Though, my doctor asked: how many calories are you getting? I was so proud to say: 1000 calories, on average, some days more, some days less!
And she made a face and said: we really need to get you to more like 2000.
She’s right. I used to eat that or even more than that when I was running, working a lot on my feet, doing sports like boxing or a lot of biking.
I told her: some little old ladies live on 1000 calories and that’s basically my inner biochemistry.
She wants me to have more of a cushion, which is totally spot on. She’s absolutely correct. For example, when I had the port infection and was in the hospital for nearly a week, I lose weight. The trip in California, when things went haywire, I lost weight.
You can’t live at the edge - the place that our fucked up culture says is PERFECT is actually pretty sick, for SOME figures it’s spot on! You can tell though, in their face, if it’s someone’s more natural frame or if it’s not their more natural frame.
For me, it’s too dangerous.
I’m working really hard at it! I have been for days. In fact, I’ll go eat some cream cheese now! (I keep doing all this and weighing myself and I’m at the same weight day after day, I don’t get it.)
But today, I’m not sure I’ll be able to walk on the treadmill later which means I’m not sure if I should eat any eggs.
The reason is that I had a surprise biopsy today!
I was planning on emailing a photo of my leg to my doctor but never heard back from the office. We happened to be around the corner today and my friend that’s driving me today is awesome. I said: let me just run up and have someone glance at it and see if I need to come back.
I hate making a 15 minute appointment, going ALL the way in and then the doctor is like: that’s an age spot! I always tack these things onto other appointments (the one on my face, btw, well she gives it some fancy name hahahaa).
I ran up and said: can someone just look at this and tell me if I need to make an appointment?
I got a yes, because this is another awesome doctor. We waited a short time, another patient was late, and my doctor had me go back.
There’s a spot on my leg that’s pretty new - which is good, usually skin cancer grows kind of slowly. But it’s the same pink color as my 2011 melanoma, the edges are ill-defined, and it’s raised. She doesn’t hate it. But she doesn’t love it either. Could very easily be some sort of nothing.
A rash of sorts would be gone by now.
For women, the leg is the most frequent place for melanoma and back and upper body for men.
So, she biopsied it. Three stitches which either I or or my mom will take out in a couple of weeks. We take out our stitches all the time for these biopsies. We’ve all had melanoma around here. Plus, who wants to go ALL the way into the doctor to have them go snip, snip.
I really, really hope it’s nothing because it’s not so small. Well, to outsiders it doesn’t look that big. But when they have to get clean margins, and make sure they get all the tissue, even a small mark can end up being a big cut.
Fuck. I really hate being cut into.
That’s the thing that I think some people outside of the Lynch world - which is pretty much everyone - may not get.
It’s exciting to have a year of no cancer, and a clean report, FOR SURE.
But it’s a ticking time bomb for us. We have much higher risk than the general population, even the people who have had cancer. If it’s not one thing, it’s another.
My Bubby, my dad’s mom, had like 8 or 9 cancer surgeries.
They just keep cutting into us.
I hate it. I mean, the biopsy is no big deal. A little shot of lidocaine to numb it.
I barely felt the needle. It’s weird. The pain thing.
I used to wonder all the time, when watching a show with spies - I loved anything with a badass female lead, the USA network had this great show La Femme Nikita that was filmed in Toronto back in the 90s and the actors weren’t American so it was a little less cheesy American style (I said A LITTLE), based on the original French movie, of course . I wondered, how do agents get interrogated and not break?
Eventually, bored after moving in with my folks, I finally broke down and watched Alias. I had boycotted it because I was irritated that they canceled my USA version around the same time they hired the goody-goody Jennifer Garner (who I love in other roles, but didn’t see her as an agent) as the lead for that show. Ends up, it’s good, I enjoyed it. But I still like the other one…because well, it’s awesome.
I get it now. The way they could just sit there while they have a tooth ripped out. I feel like they could do a lot to me, and I’d be like: that’s all you got? THEY BUTCHERED MY INSIDES MAN. Try walking around with twisted up guts.
I really hope it’s not melanoma.
It’s still just so strange without my dad. I keep expecting him to come shuffling through the door. He and I both had this weird habit of carrying a million bags. I did it before I got to NYC, but it got way worse while I was there! I remember always counting my bags so that when I got off the subway, I didn’t accidentally forget one.
When I was back there for a trip, can’t remember when, I’ve bounced in and out of the city so many times but I know I didn’t live there, a friend of mine and I went to Bond Street for sushi. I loved one of their fish dishes - the sauce was so good. I really had to stop myself from lifting the plate and licking it.
Not that kind of place.
This is a friend I’d party with - so by the time we finished the meal, I was fairly hammered. I’m sure there was a joint in there somewhere. She always had the good stuff.
I left with only one bag and we went all the way back to the East Village before I realized what I’d done.
My computer - my work computer, the thing I’ve probably slept next to more than any human being, my livelihood, my baby - was still at the restaurant. At first, I thought I left it in a cab.
I was freaking out. This is around the time I decided to quit partying so hard.
Took awhile for that habit to really go away, but this incident was one of the ones seared in my brain.
I nearly screwed up my entire freelance business for a PARTY??
My friend was not super supportive about it. I can’t remember how I got back to the restaurant but I come in, breathless, I think I was heavy then so lord help the hostess of a restaurant like that if a little chubby, bespectacled woman in her thirties comes in huffing and puffing looking for a missing bag.
Oh the looks those girls can give. (And I intentionally call them girls, not women, because too many of them don’t act like women, high school mean girl shit is not something a grown ass woman feels the need to do.)
There, underneath the long bench against the wall, was my bag tucked so far under, nobody even noticed it.
My livelihood. This was long ago enough that the Cloud wasn’t around! If my stuff wasn’t backed up or sent over email to someone, it was GONE. FOREVER.
The Cloud is scary as shit, with the kind of data they are holding on us - my brother is one of the early designers for the Cloud at Microsoft which is why he was wooed so hard by his current company - but man, I don’t miss the days of praying my computer wasn’t wrecked with all my data on it.
I pretty much don’t have anything that’s not on the Cloud in some form or another now.
I’m going to share some documents from my How to Teach Cooking to Kids with a friend I’ve worked with on and off over the years. At least if something happens to me, she’ll have the originals. I’ll just give this shit away now. I don’t care.
I’m so tired of greed.
Buy this, do you want to market your blah blah, buy buy BUY BUYYYYYYYYYYYYY.
As my dad…sometimes I just can’t. Even think about it. I feel bile rise up in my chest.
What happened to him - and I can’t share all of it here yet - was not right.
The second doctor I saw today said straight up: yeah those immunotherapy drugs aren’t really the miracle drug they are selling it as.
When I heard that, all I could think was: why am I hearing this now? Why didn’t I research it harder!??? Why…why…why…
How do I make sure others are safe?
All I can advise people is to be super skeptical. Don’t believe everything you here. If it sounds too good to be true - which this definitely did - then question, question and question again.
We vetted the doctor, we called other doctor friends….
They gave their best answers. I believe that for sure.
Did you know that if a doctor has multiple lawsuits - even wrongful death - agains them, and the medical board doesn’t revoke their license, THEY ARE NOT OBLIGATED TO TELL THEIR PATIENTS THEY ARE IN LEGAL PROCEEDINGS.
Have you heard of it? Nope. Probably not.
I remember one line: you can find out the safety of your toaster easier than you can your doctor.
I just can’t keep it all in now. I can share this basic information. This isn’t going to be SO surprising to anyone. I just can’t get into details at this time.
But yeah. Be careful. That’s all I can say.
If there is something that looks like it needs a biopsy, get a biopsy.
If something feels off, move on.
Make sure you’re getting multiple good reports about somebody before trusting them with anything like surgery or even chemo.
Don’t get any test, until you find out if you’ll be responsible for paying for it, or if you even really need it.
In 2016, when I was so weak and sick in San Diego, one doctor wanted me to get a sleep apnea test. It was fine, but I never understood why I did that test.
Lo and behold, it was months later that the same doctor discovered my testosterone was zero.
I’ll never forget that conversation! He said: omg, I don’t know how you can even get out of bed with zero testosterone!
I replied: I can’t, that’s why I’m moving in with my folks.
Oh man, that was a tough time.
For anyone that’s confused. Even if you go through menopause but still have your ovaries, you still produce some hormones! Just not the levels you do when you’re younger, but there’s still quite a bit - everyone is different.
But because I’m missing my ovaries, and at such a young age, I don’t have ANY estrogen, testosterone and progesterone.
Now, there are other sources that create the precursors for these hormones. For example, the adrenals produce something called DHEA which is one of the things that makes testosterone. Since my adrenals don’t work awesome, I don’t have that either.
There are so many back-up channels for these types of things in the body. It’s pretty amazing.
But if you keep getting hits like I do and my dad, eventually the body doesn’t have any more back-up.
That’s why I do everything in my power to evaluate my biochemistry - which mainstream medicine thinks is akin to flying around on a broom - so that I can replicate the optimal numbers for optimal health.
It’s taken SO long to get to the right people, I don’t know which organs have been suffering all this time.
I may find out sooner than later. Like cancer growing in a lung because that organ system didn’t have the correct nutrients, or the immune system didn’t absorb enough of the building blocks of protein - amino acids - and therefore, the cells get weaker, and weaker.
That’s why it’s absolutely bananas that mainstream is so nonchalant about nutrition.
If you don’t have the right nutrients, and you’re struggling with a lot of illness, how the heck does each cellular pathway have what it needs to do it’s job??!!?
The reason why they’ve never been able to find a way to modify appetite in a safe way is because there are so many mechanisms in the body that serve as back-up if one thing goes kaput.
I have no fucking idea how I remember the name of this book - like I’ve said, I used to have a pretty extraordinary memory, now…not so much - let’s see if I can find it, because it was very interesting and it was written about before genetics and 23andme mainstreamed genetic testing and epigenetics.
Ok found it. It’s called The Hungry Gene, from 2003. Yes that makes sense that my brain would remember that from that time when it was still sharp, and NYC hadn’t overstimulated it yet. The book shares the different pathways the body will utilize to ensure that humans eat.
I think about this when I lose my appetite.
I remind myself that something else is going to kick in, another biochemical pathway.
That’s how awesome my doctor is - she said: I want you to have a cushion.
I said: I completely agree. If I can still eat, I want to eat, but let’s see if we can supplement with some IV nutrition too.
I’ve GOT to work on my food wish list. I’ve got people who are willing to cook now! Omg what a relief. WHAT A RELIEF!
I can’t tell you how terrifying it was to watch my body break down SO bad this winter, and practically shaking people, doctors, help me help me, something isn’t right, when the gut shuts down….
And watching my dad getting weaker at the same time, and I’m helpless to help him!?!?!? Oh god this will definitely be the worst, or one of the worst years of my life, for sure.
That’s the thing that some able-bodied don’t necessarily get about my personality.
That feisty, annoying, loud part of me is why I’m still alive.
It’s a funny thing to me - sad, but also funny - when people act like I’m so annoying.
But who do they feel safest with when in the hospital or weak or sick?
My poor Dad. He’s used to strong women for sure.
But I was a bit intense for him.
These last months, he made it clear he was glad I was here. I’d make sure he had some hot chocolate with extra whipped cream, or the ingredients he needed from the store for his nightly snacks, or advise him on how to increase calories.
At the end, when he was pretty drugged up, someone wanted him to wait to get his next dose because someone else was coming to say goodbye.
But they took too long. I tried to be respectful, but my dad kept getting more and more agitated, because he couldn’t breathe! It must have been an AWFUL feeling. He started grabbing at his gown, tearing it off his chest, omg, it was horrible horrible HORRIBLE. I had my hand on his shoulder, and kept telling him loudly: Dad, the nurse is getting the drug, you’re safe, you’re ok, just hang on a second. I could feel it calming him, like you would an infant who was agitated.
They knew someone was about to get them what they need.
The nurse finally looked at me and said, I’m giving him the drug. And I said: PLEASE DO.
He knew. He knew as long as he heard my voice that he was safe. I’m so so glad that my annoying side, that often drove him bananas, ended up being the very thing that brought him a sense of security at the end.
I did the same thing when we were in the ER, the very last time. He was so agitated, OF COURSE, because dying feels like SHIT, and he couldn’t breathe.
Everyone is dinking around. Like I’ve mentioned here, medical stuff usually moves very slowly.
I insisted that he get Ativan to calm his anxiety - ya know, because suffocating to death is NOT SO FUN - along with the Dilaudid (synthetic morphine - same shit I was on for a good two weeks after my surgery, can only be given in an IV, not pill).
So the ER nurse is entering all this information into the computer. They have to do a lot of paperwork when it’s narcotics. I’m trying to be patient, but I’m frustrated because my dad is leaning over with this mask, and looks so uncomfortable. I don’t know where my mom and sister were. It was just me, him, and the nurse. I’m trying to soothe him, talking to him like I would a small upset child: Dad, it’s ok, she’s working on getting you the drugs that will help make you feel better. He was pretty out of it, but I’d still talk to him in a soothing voice.
Some admin woman comes in and starts asking the nurse a question, then another question.
I lose my patience and snap: hey can we get my dad his pain meds please?
The outside woman says: oh yes, sorry, and carefully closes the door. And the nurse starts to hustle.
This is the deal: if no one like me is advocating for you? They just ignore or take their time.
At one point, during that visit, I’m walking through the ER. I made eye contact with a bunch of staffers.
It’s not hard for me to look scary these days! Sometimes I almost laugh because people take a double take, and I’m talking to myself about some random thing, or writing in my head, totally not feeling “badass” but my furrowed brow adds to the overall effect.
And people move out of the way, or open doors for me, and I smile brilliantly and say: thank you!
Then I realize, oh, they were kind of intimidated.
That, my friends, is why I can make sure I dial up the bitch and make it clear with just a glance at me, they know: do not fuck with me. Do not mess with my poor Pops.
I looked over at him after I snapped at the woman.
Normally, my sweet dad would admonish me, Julie, it’s ok. Or he’d be irritated with me for being grumpy with the staff.
This time, our eyes barely caught because he felt so shitty and he had to bend over a lot in order to breathe.
But I knew.
I knew he was like: I’m safe. Nobody is going to fuck with me when Julie is around.
Nope. Not a chance.
I just wish to GOD I HAD BEEN ABLE TO HELP HIM MORE THIS WINTER.
Do they see it? Do they see the connection? If I’d had more support earlier - if I had figured out HOW to ask for help earlier…if I hadn’t had to work so hard to help democracy for 2 years while so many did nothing…do they understand, the ripple effect?
What happens to me now that my dad is gone? When one of us goes down….
We’re not a normal family.
There is nothing normal at all our about situation. Without him, I’m more at risk.
Without me, the rest of my family is more at risk - especially if I don’t have the bandwidth to download all my data and nutrition info and doctor referrals before I pass away.
Ahhhh, but now, when the community comes together, and they cook, and they support the little weak link like me, the grumpy lady with the weird hair, who has a few nutrition books, especially on gut health and cancer prevention too, inside her brain, trapped for now, then…the ripple effect goes the right direction….
So many people in my family have been annoyed with that snappy side of my personality for years.
But lemme tell ya, when it’s you in the hospital gown, there’s no one else you want sitting on the other side of the room advocating.
He was too nice. For this medical system. Nice won’t cut it. You have to holler, and yell, and scream and say FUCKING GIVE ME WHAT I NEED. And maybe even cry on the Internet like I did.
Until you’re finally heard.
I have my team now. The missing link now is a GI doc or someone that has invented ways to image scar tissues and finer details about what’s going on inside the abdomen.
Oh! I forgot to mention. The surgeon who deals with all the difficult cases that wouldn’t operate on me? And practically walked me to the door when I met him over two years ago?
My lovely doctor - who happens to be easy on the eyes, and brilliant and amazing - can get these guys to do ANYTHING. I fucking love it.
Oh, Dr. X wants you to see me?
Suddenly his office is on board.
These female docs aren’t just giving me medical information.
They are my proteccion - and I’m intentionally spelling it that way in the Italian. I have two dudes too who I love. But these ladies…
Anyway, I’m very grateful I found them in time. At least I might be in time. Who the fuck knows what little cluster of cells is growing in this body. High dose Vitamin C, I’m SO close…so so close. Could be as little as 6 weeks, probably longer. But I’ve got my important three appointments lined up to develop the protocol based on my labs, and what I’m eating and what I’m getting in my IV bag now. So many variables. So many steps.
It’s not going to be easy, this next chapter. I’m not quite ready for it. I need a little more time to stare out the window and cry for my dad.
Who didn’t deserve….
Well, I need a little more time. To process. To grieve.
But then if I don’t want a sequel to what happened to him, then I need to get a move on it and find a way to stop my gut from slowly breaking down anymore. I know I may not be able to greatly improve it, but I’ve got to at least slow it down and prevent it from getting worse.
The doctor today - I saw the look on her face. She knows.
I’d sent her a photo of my dad from May 5 - the one I posted from yesterday.
I said: people don’t understand this condition.
They don’t get how we can look so strong on the outside, and have so many problems on the inside.
She gets it.
I’m lucky as fuck.
But it’s also because I’ll do whatever it takes to survive.
I’d rather be likable and have a regular job.
I can’t have that, and this is the hand I’m dealt so this is what I have to do.
If for no other reason, then to make sure my dad’s name and his legacy lives on.
I’ll stick around for that, for sure.
It’s a cool story to tell. And as chill and humble as he was, I know he’d love to have a foundation for people to get healthy, or work out for cancer or something awesome like that.
It hasn’t fully come to me yet, but it will.
For now, I heal.