Adenomas All Night Long

Up late, thoughts all over the place. I am back to sleeping upright on the couch as my liver does better when I do that. However, it does tend to lead to late nights where I'm far too alone with my thoughts.

1.Tonight I've been googling my diagnosis. Which I can barely spell or say.

Hepatic Adenomatosis.

Ha. Spell check has never heard of it either. lol

This is likely caused by my personal mix of abnormal hormone fuckery, oral contraceptives, and long term high dose prednisone. Remember, before all the asthma inhalers came on the market, I was on prednisone almost continuously for 15 years.

2. My care team is coming together. My OB, bless her, gives a shit and is saving my ass almost single-handedly. She has hooked me up with the hepatologist who has seen this before. Another specialist because we're going to do a 2 for 1 surgery to put me into menopause and take care of childbirth related incontinence at the same time. And a new primary care doc.

I am told if we can't get these things to stop growing, I will need a transplant. I have too many adenomas to be a candidate for a liver resection.

(Although as I read more and more medical literature, I am hoping that we can get by with spot treating the troublesome ones. Odds are all 30+ of the tumors won't keep growing. Some could grow. Some will likely disappear...I hope. Others will remain inert...I hope. 

My liver is, thank god, holding up.  All normal blood work.

Thank god I never drank and never smoked and while PCOS makes weight an issue, I do not have the worst food habits of the average american. When this all started, I ate like a freaking genius. All veg and protein. It's this GI stuff that has degraded my diet over time. My stomach hurts constantly and my system struggles with complex food that needs a lot of work to digest.)

4. My case went before the tumor board. We're all waiting to hear back on that and then we can start scheduling surgeries. I'm guessing things won't come together until January, although I also guess I'll have a biopsy or some kind of liver focused procedure before then.

The largest tumor is bleeding inside itself. I'm learning from other patients that it's an indication of rapid growth. I'm wondering if they're going to want to do something about that. Also, they can't rule out cancer from the MRI and a biopsy was recommended by radiology.

5. I've had 10 medical appointments/er visits/lab tests in October. 2 of the doctors I saw met the legal standard of malpractice (Hi. I have a lawyer in my family. I ask them things.). At least I knew enough to keep pushing. That saved me a lot of grief and kept them out of court.

Most doctors will never see a case like mine. It shows. Badly.

6. Being sick is a job. It's driving me out of business. All I do is go to the doctor, make phone calls for the next doctors I need to see, or order copies of records. In between I take care of my family. I don't have time or energy for work after that. I'm closing up shop and taking a medical leave for the next several months to focus on my health and my family and screw everything else.

If things don't go well, this is the beginning of The End. I highly doubt they'd accept a fat, prediabetic with pro heart attack PCOS and bad asthma as a transplant candidate. I'm not even sure I could feel okay accepting a liver. Something else would fall apart. I'm full of gremlins that way.

7. The toxic people in my family have been toxic. Quelle surprise. I had to cut one relative off because they wanted my tumors to be their trauma and were willing to be quite nasty to claim that for themselves.

I mean, I'd happily put all these tumors on their liver and adrenal gland, if that was possible. Far be it from me to stand between someone an their megalomaniac martyr complex. However, a tumor transfer is a no go, and I need to keep my headspace focused on what's going to get me through this, not let their damage side track me. A couple other relatives aren't speaking to me because of that. Fuck 'em all.

It's also amazing the number of people who can't manage a simple 'I'm sorry to hear that.' Of all the people I've supported, financially and otherwise, when they or their loved one was sick...exactly one even bothered to contact me.

And a woman I barely know from church sent me a very sweet card.

I haven't been surprised exactly. I know it goes down like this, I just didn't think it would be this bad.

8. I swear, if the letters I B S fall from another doctor's lips, my head is going to explode. It wasn't IBS you jackasses. If you'd really listened and really looked at the clinical evidence, my body was telling you about the adenomas even if they weren't visible on CT scan yet.

It was all there. You just had to pay attention. Chronic right upper quadrant pain, normal blood work, no gall stones. No improvement with removal of the gallbladder. That's a pattern anyone can see. Order the MRI when it shows up. Especially if the patient has an endocrine disorder and is on long term steroids or bcps.

My GI knew something was off, she just didn't know what it was, but she never once said IBS. What she said was 'You need to be at a larger care center. We don't have the capabilities you need.'

And all I got from the larger care center that you have heard of was...IBS.

Bah.

My hope is to send my GI a letter once some of the final diagnostic stuff is sorted out just to let her know what it turned out to be. My sense is she'd like to know.

9.For the record, I did ask for a hysterectomy several years before any of the adenomas started. I have always known my hormones needed to go. I live in this body, I can feel the dysfunction in a visceral way that most doctors (unless they also have PCOS and HPA axis suppression) will never experience. I understand that's not how medicine works, but it's how patients work and the patient keeps getting left out.

IBS Is BS

Hubby: Why do they say you have IBS? You have all these lesions and cysts all up high where your pain is.

Me: (laughing) Oh honey, I'm a woman. Women aren't allowed to exist for a GI doc unless they have IBS. You think *male relative with lots of GI stuff that could easily be pegged as IBS at the same hospital*  is ever told he has IBS?

Hubby: No.

Me: Correct! You've earned your gender bias identification badge! Of course HE doesn't have IBS but us wimmin folk, we're nothing without it. IBS is how I know I exist as a woman.

Midnight Mumblings

Spent a half day at the big medical mecca. Saw a hepatologist. Got stuck over and over for blood work. Trying to find a way up.

Naturally, there's no way these growths could be the source of pain or a reason to go to the ER.

I mean, this only happens to like, .004% of women. And it's the only abnormal finding I have. And the pain is right over and around my fucking liver.

But let's not allow Occam's Razor get in the way of medicine's pathological need to deny all things all the time.

I had no idea you could cherry pick when Occam's Razor applies.

And of course, out of the other side of their mouth they're telling me that the tiny lesions are bursting and that's why I have pain.

PICK A LANE, PEOPLE!

Now I can't sleep. I'm exhausted, though. And frustrated and stressed and tired and my stomach hurts. I see some random OB/GYN today to discuss getting off birth control pills and the possibility of a hysterectomy.

I don't want a hysterectomy, but I think it's the right move. But I really don't want major surgery. I don't want to deal with doctors any more than I have to. Medicine is like a horrible ex I can't get away from.

And the OB/GYN is a man, which increases the odds of mansplaining and talking over me by about 1000%.

I will say, on the GI side, I'm seeing female doctors now and it's better. They still say all sorts of stupid, baseless shit just like their male counterparts, which I don't know why doctors think they can just blurt out any old diagnosis without doing the empirical leg work.You'd think that would come back to bite them often enough that they would stop. Apparently not. 

The big difference is female doctors actually order tests to actually find out things. Male doctors just talk over ya and boot ya to the curb. Exhibit A: The male GI who talked over me, said he would call and then ghosted like a bad Tinder date. Exhibit B: The female doctors ordering the tests. Exhibit C: The hepatologist said as much today lol.

Aside from OB/GYN, I'm waiting on a liver biopsy to be scheduled as well. My liver looked funky enough that the radiologist couldn't rule out cancer.

My blood work must've had some kind of asap rush on it because results started pinging my email within two hours. Thankfully, everything is mostly normal (for me).  Liver is working well despite all the growths and the NAFLD. Creatinine is a smidge abnormal, but I'm going to chalk that up to dehydration. By the time I did the blood work I hadn't eaten in 18 hours and had barely had any water.

And I do have some nominal wins to report. (I'll take what I can get right now.)

I'm not diabetic, which I always worry about because of PCOS and all those high dose steroids I took for asthma back in the day. Insulin resistant, yes. That shows in my A1C, but no type 2, not yet. Knock wood, not ever.

I'm not anemic. The stuff I do to keep my iron up is working. 

My cholesterol is as perfect as I can make it. I've had problems again with high triglycerides. Thanks to PCOS, they spike off and on. When I was younger I could manage the dyslipidemia with diet, but as I age, of course, that isn't enough.

Naturally, the statin the PCP gave me permanently damaged my feet.  I'm told they were supposed to tell me to take COQ10 with it, but that didn't happen and now the balls of my feet hurt all the time. It's been over a year and it's not getting better.

So I ditched the statin, didn't even make it two weeks, the pain in my feet was that bad. My PCP did not give one shit, didn't even suggest a different med or anything. I was left on my own to figure it out.  Which I did. And I brought my triglycerides down from 600 to normal.

It took a while and I have no idea how well it will maintain, but I did it. I used niacin, COQ10 and fish oil coupled with intermittent fasting and more consistent exercise, which let me be clear, I am not breaking any fitness records over here. At all. That is my constant struggle, to find energy and time for exercise.

And by time, I don't just mean I'm a busy working mom, I have to process through things like random broken elbows and surprise concussions and asthma and whatever is blowing up in my gut on a rotating basis.

Looping back to the hysterectomy for a moment. One concern I have is I'm going to get rid of all my hormones, not be able to use HRT and be miserable. The other concern, how the loss of hormones will affect my heart. The dyslipidemia can be pro heart attack and tough to beat back at times. I hate the idea that I might be making heart stuff more possible.

Or maybe I'm over thinking it.  I don't where up is at the moment. I haven't found my North Star for all of this yet.

Remarkable Me

It looks like no one is reading my new posts. It's sad in a way because blogs have largely dropped from search engine results. If you're not in a FB group or other community as a patient you are out of luck. All the connections are there. No more googling and finding first hand patient accounts.

Anyway, my MRI results came back.

I am probably a true medical zebra.  The kind of thing docs might never see in their careers. My MRI is probably going to end up in some powerpoint or slide share somewhere.

Basically my "remarkable" liver is riddled with growths. I have ~30+ adenomas on the liver. A bunch of cysts on the pancreas. An adenoma on an adrenal gland.

I don't know yet what's going to happen. I still need to see the hepatologist.

Get off bcp, obviously. Probably a biopsy. After that I don't know. Probably wait and see what happens to all my growths. If they go away, great. If not, I might have to have a chunk of liver removed.

I am wondering about a hysterectomy as well. Because with PCOS I need bcp, it's not a lifestyle choice. And if you take me off bcp, with PCOS I can still produce a shit ton of estrogen...which is what feeds these suckers. So what's left? Hysterectomy. Voodoo rituals...which don't even have a placebo effect.

The idea of a hysterectomy is kind of terrifying. Some women do great, some don't. Which camp do you think my odds favor? Do I feel lucky? Nope.

In the Middle of the Night

Can't sleep. Too uncomfortable. I'm doing my best to sleep upright as I've found that is the #1 thing that helps, but it's easier said then done. I bought a special wedge and it sucks. I've been trying different combinations of pillows and blankets and that sucks too.

I'm now on the couch. The couch tends to work, but makes the hubby sad. He misses me. I miss him and the dog--who snuggles so sweetly I can't hate her for being a ninja psycho who once broke my elbow.

I finally had a GI appointment with someone who did their job. They still breezed into the exam room convinced I had nothingburger IBS (I'm guessing with as often as IBS comes up for me that's all GIs ever say to patients, that diagnosis just seems to be a very popular dumping ground) but I wasn't eating still and had lost about 15 pounds so they couldn't write me off completely.

I had an MRCP which was interesting. The secretin reproduced all my symptoms buuuut I was told the pancreas looked fine.

HOWEVER, there is something going on with my liver. Which we kind of knew since the ER said I had a lesion on the liver.

Try lesions.

That *zebra alert* also happen to be rare. So they say.

I also have fatty liver. Here's that math: PCOS + 15 years high dose prednisone use = fatty liver starting around age ~29 in my case. (I didn't even party! I'm having all the downsides of booze without drinking any! And all the real alcoholics I know are fiiiiiine. Fuckers.)

Clearly there are happenings in my liver.

I'm now trying to get an appointment with a liver specialist. Even with a referral from the one GI, it's been the usual bureaucratic clusterfuck. I'll get the ombudsman involved if I need to.

Because I'm struggling to eat and sleep. The status quo is not sustainable. Not that it looks like GI has much to offer. I've been doing a lot of research on different GI things as a close relative has recently had a gas-tric cancer scare. I know more than I ever wanted to now.

I've come away from my deep dive into the medical science of guts with the impression that GI doesn't know much and can't do much either. The survival rates for gas-tric cancer are absymal...to the point where I thought to myself, as I read, 'chemo doesn't work for this at all' and whaddaya know? I then found a just published article where an oncologist said exactly that. Liver cancer survival rates aren't that great either.

Basically, if you can't avoid cancer, you want the thyroid one. That cancer has good survival stats. Keep your gut healthy. GI cancers are still in the Dark Ages.

And everything is IBS in the GI world. GI is like the Oprah of Guts. You have IBS! And you and you and you and you! Do you have a vagina? YOU HAVE IBS!

But...

I said, YOU HAVE IBS!

But...

HERE ARE SOME ANTI DEPRESSANTS THAT WILL KNOCK YOU OUT LIKE ROOFIES!

But...

GOODBYE!

The GI specialty has a whole alphabet of IBS 'types'. C, D, M...I forget the others. I think they proposed a new one recently. I keep saying they need to add an IBS-G for the gallbladder removal patients, because get this...when the loss of gallbladder screws up your innards and makes you dump bile, they've apparently decided that's IBS too. Even though it doesn't meet the diagnostic criteria for IBS (from what I can tell). There are dozens of IBS-G patients milling around in IBS FB groups going 'WTF, whhhhy am I here?'

If you spend any time with the patients, it's really obvious that there's more going on. My impression is that IBS is where they put you when they don't know what to do. At some point science is going to figure out some new diagnoses and realize they've given some patients a raw deal. At least that's how I see it.

I'm kind of fascinated by how social media has brought more and more patients together and almost nothing has changed in medicine. I'm not the only one who sees IBS this way. Other patients see it too and...nothing has changed. Critical mass doesn't matter in medicine. Not when it comes from patients.

Anyway, I don't expect much from GI, but I'm guessing my liver will need to be monitored. Maybe a biopsy or EUS. Depending on the type of lesion, this may have a hormonal component that will intersect with OB/GYN as well...not that anyone will know what to do because this is supposedly soooo rare. We'll see.

My goals right now are 1. Get that liver specialist appt. 2. Get into a new primary and get blood work. 3. Do a daily 20-24 hour broth fast as I do better when I don't eat and then eat one simple meal (which might just be yogurt at the rate things are going). I'm at that tricky stage where I'm better enough to be hungry, but not far enough along to actually eat anything. That is a special kind of misery, I tell ya.

If anyone remembers, the last time it was almost a year of this BS (literal and figurative lol) and then on and off again ever since my gallbladder surgery. I'm guessing it was my liver this whole time.

That's another thing I've noticed about GI stuff, patients have problems before there are clinical, objective signs of a problem. Chronic pancreatitis patients are parked on IBS for years until all the clinical criteria finally lines up and/or a doctor finally orders the tests.

I have the same BS from 5 years ago, but this time with liver lesions (and normal blood work, although I'm not sure all the liver things were checked, hence #2 above). Where were these lesions the last time? Who knows? Not the GIs.

Crap. I'm Back.

I tried to sail off into the sunset and have a happily ever after, but that is not how any of this works.

I have pancreatitis again.

And a lesion on my liver.

Amazingly, it's the usual struggle to get medical care.

I'm to the point where I fantasize about hiring a lawyer to sue hospitals into providing care.

Or making a protest sign and sitting outside the clinic. Hunger Strike for Care (it's not like I can eat anything, might as well make it work for me, right?).

Or just bringing my really cranky male relative who is prone to screaming until they get what they want to all my appointments. Because doctors jump for them when they do that, but me being socially appropriate gets me no medical care at all.

I don't get how this works.

Is it because I don't have a penis? Is that it? Men can't hear people with vaginas?

Oops. I forgot to have a penis. Sorry. My bad. You are absolutely right to ignore the lesion on my liver and the fact that I keep getting pancreatitis. Clearly this is all my fault and I should die.

Meanwhile, I can't eat. I struggle with sleep because I'm so uncomfortable. I've pulled 2 all nighters in the ER this past week and was borderline for admission due to a fever.  I opted to go home and pinned my hopes to a specialist appointment.

Oh fun! Yet another male doctor who talks over me, hasn't looked at my file, but says he'll call.

He didn't call.

So, like, whatever.  I'm doing everything I can. I set up an appointment with another specialist somewhere else. Maybe my vagina won't instantly strike them deaf and dumb.

***

I still have asthma. I broke my elbow (or I should say the dog broke my elbow) a while back (very painful, worse than pancreatitis which is saying something). And I got hit in the head with a heavy ball at a park and had a concussion.

So even if I'm not posting, don't worry, nothing has changed. I'm still a walking disaster.

***

Kiddo is good. We are homeschooling. Last year was just a mess of nothing good. Shooting incident at the school that was horribly mismanaged by the staff. A bullying incident involving death threats and the bully's parents were so nuts, I just thought 'why am I sending my kid to school with everyone else's damage? why?' And the teachers were not good which meant the academics weren't good.

At one point we were teaching her math, not her teachers. They couldn't get it done. I said to my husband, 'Why are we killing ourselves to go to this school? All this car pooling and schlepping for what? Our kid to be bullied? To have real life experience with school shootings? To have teachers who teach in such a way that our 99th percentile math kid gets an F on the fractions test? To have teachers who never finish a damn novel study in ELA? What are we doing this for?'

None of us were happy and we didn't want to go back, but our school options were limited. I couldn't even find a private school that I felt would be a good fit. So we're homeschooling, and surprisingly we kind of love it so far. It's going really well.

We're about a month in and just working to fine tune our curriculum as some things we've liked and others we're finding to not be a great fit, and figure out our pacing (we've adjusted the work load several times trying to find the right balance).

For those who are now freaking out about socialization:

1. I've followed homeschooling for 10 years as I've always supplemented her education. People who harp on socialization just sound ignorant. I can tell you've read exactly nothing and know even less. You should do some research.

2. Girl scouts. Church. Live online classes. A coop. Small group for World History. Theater workshop every week. Makers club at the library. Folk dance troupe. Homeschool band class taught by certified teachers through a non profit. Yes, we are doing all that on top of book work. We've already covered way more than she did last year in school and it's only been a month.

Like I said, you don't know what you're talking about.

***

Writing. The industry went to hell, but I am surviving. I focused on quality over quantity and it worked. I'm not getting rich, but I don't need a day job. I have the skills I need to do this writing thing, I just need to wield them better, which I think will happen with time.

I feel seasoned. Like I know how to roll with the punches now. We'll see how long that lasts.

However, I do need to be healthy to make writing work. That's been the big challenge recently. Having the energy to work when you're in pain and not sleeping much and either not eating at all or subsisting on ~400 calories a day of jello and broth is tough.

Howdy! Welcome to the impending brain invasion!

First up, an answer to a comment:

"Hi, I am looking for info on weaning from flonase. I stopped it abruptly and quickly discovered that was a bad idea. I find very little info on nasal sprays, a lot of it is contradicting as well. Most doctors say that nasal sprays don't need to be tapered but I have steroid withdrawal symptoms. Any input would be great :) thank you." 

1. Doctors don't believe anything can suppress the HPA axis beyond 10 days of high dose steroids. Unfortunately, bodies do not give one shit about science. You can make eyes read the textbooks and brains memorize the 'facts'...but you can't make the body perform to the scientific standards. It doesn't work that way. Bodies are post-truth. 

My body has defied science when it comes to HPA axis suppression. Any body can. Doctors need to do a better job of understanding how much variation there can be at the intersection of science and the human body...particularly in the realm of the HPA axis.

2. What I would do, if you think you're going through withdrawal, is taper your Flonase. Try skipping one dose on alternating days.

So if you were using 1 spray 2x a day, drop one of those...try taking one dose in the middle of the day (to help it get out of your system by nightfall to help your HPA axis reboot and to avoid taking it during the am hours when cortisol production peaks). The next day take the full dose and 'rock' back and forth until you no longer feel like utter shit from the missing dose. At that point you cut one dose permanently and then alternate dropping the remaining dose.

If at any time you feel horrible, just go back to taking the initial full dose. Sometimes you have to go back wards to go forward with tapers. Once you feel okay, start tapering again and you'll likely find it goes much better the second time around.

So Hi.

I'm here.

Doing okay.

Nothing worth complaining about.

Except for this raging tooth infection trying to cross my blood brain barrier. OF COURSE there's a bad doctor story behind it. You think it's weird that it always goes down like that for me?  Well, so do I! I'd love for it to STOP.

Anyway, I had a botched filling last year that left me in a lot of pain. I went back once or twice and they were unable to fix it. They couldn't figure out the problem (code for: We fucked your teeth and don't want to own it) and suggested I might need a root canal...

for a tooth that never bothered me until they touched it.

So I've lived with it for over a year because the other thing they said was the nerve might need six months or so to calm down.

Which didn't happen.

I just stopped chewing on that side of my mouth.

But then that started fucking with my jaw so I had to chew over there and suck it up.

And now I have an infection.

On the weekend.

Which always makes these things so much more fun. (There are ZERO emergency dentists in my area by the way.)

My tongue is numb. How about yours?

Lucky(?) for me I have antibiotics on hand and they seem to be kicking in. I don't have chills anymore and mostly don't feel like I'm choking to death. I have a (new) dentist appointment tomorrow where we'll have to sort out whether I need a stronger antibiotic or not. And how many root canals this is going to take to fix as it's more than one tooth now.

Meanwhile Reddit is feeling super sorry for medical professionals who have to deal with abusive and nasty patients.

Snort. Yeah. Right.

I'm gonnna file that one under 'lies people tell themselves' and 'things people project onto others to deflect from their own shortcomings, see also: gaslighting.'

On the writing front...eh. Last year sucked. It would help if I would write to market, but I've decided to write some off-the-wall shit that sells at a slower rate instead because GENIUS...I am not. And my current novel is due next month for a group project and well, I killed the hero. My heroine is actually sort of relieved as she wants nothing to do with him. So that is not going so well.

I was accepted to a kinda, sorta prestigious competitive writing workshop. They even checked my references and writing samples. Perhaps I'll get somewhere someday.

If the bugs don't get my brain first.