Today's Roulette Menu

Tumor board says...more MRIs to see how it goes. So no surgery, which is a relief (that was beyond brutal last year). We're hoping the bleeder will just go away vs. rupture. So that's a fun roulette wheel to ride.

Thankfully, it's not as symptomatic as the one they removed. I just have to take it easy when it acts up, not get hit in the stomach, and go to the ER if it gets worse so they can look at me and go 'we've never heard of that.' Them's the rules.

Which, by the way, the second you absolutely cannot get hit in the stomach, you know what happens, right?

The universe just comes for you no holds barred.

I have taken more hits to the stomach this year than I have in my entire life. I could be in a padded room, wrapped in bubble wrap, and there'd be something walloping my gut. The universe knows what's up.

Anyway, I've been doing a 'dirty' anti-inflammatory diet this week to see if I can find something sustainable that might help persuade the tumors to go away. 

It turns out, the anti-inflammatory diet is basically plant based vegan with a lot of nightshades for flavor so that limits my options (for anyone who doesn't remember, I love tomatoes but they hate me). So there's been a lot of sweet potatoes. A lotta orange glop, man. So much orange glop.

Dirty =  some butter, some cheese, diet rootbeer and more sugar than I'd like to admit. I'm working on it. 

In other news, kiddo has PT and neuro set up. Knock wood, she hasn't had any bad falls since the one that prompted me to ask for the neuro appointment.

Up to Date

Hello! Long time, no post. But like, no one ever makes it to the front page of this blog, so really I'm just talking to myself. Per my stats, there are just a handful of posts that see all the traffic.

Anyway...

When last I posted, I was working submitting my case to the NIH for a study, trying to get a uterine ablation set up as well as an MRI for a tumor check.

That particular tumor check was uneventful.

I finally got a letter for the NIH from the endo I like and sent NIH everything. (Surprise, surprise the endo I thought was an ass couldn't even spell my name right making their letter unusuable. Lovely attention to detail. Just lovely.)

NIH called me several times. Yes. The actual researchers called and talked to me and then...crickets. The last time I heard from them, they wanted to know how often I was on prednisone. So I'm guessing the steroids disqualified me.

Womp womp.

They didn't outright refuse my case, so maybe I'm on a reserve list...if they can't find any better candidates maybe I'll get a call??? I don't know.

Life goes on.

I had the uterine ablation. I love my OB/GYN. We work well together and they are just magic. Super easy procedure. Very little pain. Absolutely the right move to head off heavy cycles due to the inability to use birth control pills. In fact, my body still manages to have some kind of cycle despite the ablation, and I have no doubt that, without that procedure, I'd be having all sorts of issues with anemia.

Only downside...getting back to exercise after recovery, I messed up my hip and I've had problems for the last 6+ months. It's been really frustrating and I haven't been able to be as active as I'd like.

I had another MRI tumor check last week. I didn't know what to make of the report. I could tell a tumor about the size of a walnut was bleeding internally. The other tumors showed 'fading', they weren't registering as bright, which I thought might be a good sign.

I actually convinced myself it was all good news. The mental cloud that lifted was huge. I could think about the future in a way I couldn't before. I felt like I could make plans.

Buuuut...then I heard from the hepatologist aaaaaand my case is going back to the tumor board.

Womp womp.

I am hoping it won't be a liver resection. I am not up for brutality like that again. I know I had it easier than many people, and it was still too much for me.

My asthma also flared with the last MRI. I don't know if it was the MRI or what, but I got really sick. I even had trouble holding my breath in the MRI, which I don't usually have issues. So I ended up on prednisone and am still not 100%. Naturally we went on vacation right after the MRI and that was pretty much a shit show. I stayed at the hotel the first three days, too short on oxygen to walk.

And if that wasn't enough...my kiddo is having issues with her neurological stuff. She was good for quite some time and now it's all gone kablooey on her. I'm working on getting her back into a neurologist. It's scary to see it happening again and I worry that maybe there was a misdiagnosis. Maybe they missed something. The neuro team we started with way back when was a bag of dicks, so I would not be shocked if they decided it was actually something else.

I told the ped we needed PT again, but they didn't register what I was saying. So I brought it up again and had to clarify it's a motor thing because they are used to it being more cognitive in presentation. I got the PT order, but now I'm asking for the neurology consult because things are much worse than when I first started asking for help.

End result...I don't know what's next. I don't know what plans I can make that won't be interrupted by medical fuckery. So I'm kind of stuck...not sure which way to go. Waiting.

I should hear from the tumor board later this month. As for the kiddo, I'm not sure how long it will take to get her into a neuro.

At least we met our deductible for the year! But then, we always do!

Breakthrough

Today stretched to infinity and beyond.

Waking up at 5 am the week Daylight Savings Time hits will do that to you.

I schlepped my tired ass to endo #2 at the butt crack of dawn this morning. This time I also brought an entourage of support with me. Yes, I called in the troops. I asked the baddest mofos I know to be the heavys at my appointment.

"Don't let them dismiss me."

"You can say things I can't."

"You're the bad cops. I'm the good cop."

Aaaaaand I didn't even need to do any of that.

The endo was a brilliant physician. Which I knew, as I'd seen them before, but that first 'diagnose and ditch' endo appointment made me panic a bit.

The highlight reel...

1. I have support for my efforts to qualify for the NIH study. They'll write a letter and help me with switching around meds for additional blood work. After two doctors looking at me like I was crazy to even consider the NIH, this was a welcome surprise.

(Also, I feel like more doctors needs to use the Yes Principle of Parenting. Say yes whenever possible. What does it hurt them if I go to NIH? Sure, I get not wanting to mess with the meds and have that liability, but we aren't even at that bridge yet.

Let the NIH decide if I'm a candidate, just give me the chance, we can dither about managing meds and all that IF I actually qualify. Trust me, I'll keep going to docs until I find one who will work with me on this...I just need you to facilitate this interim introductory step. That's it. I'm not asking ya to marry me, and I'm sure the NIH would be super thrilled to know you're keeping patients away from their studies...for what?)

2. I saw my adrenal glands on the CT scan. OMG. It made me so sad. They are so atrophied. So so so atrophied. I had NO idea this was what the steroids were doing to me. None. The endo showed me and explained the devastation. There are literally black, empty holes that should be filled with adrenal gland. It was really sobering to see that.

Here's a pic I found online. Mine are like the ones on top. (Middle is normal. Bottom is excess cortisol production as in Cushing's.)

3. The tumor is teeny tiny. I might not even be a surgical candidate, and with as atrophied as my glands are, I'm no longer sure it's the right move anyway. (I still want to go to the NIH though and have them tell me what they think.)

4. I probably do have some periodic adrenal insufficiency going on in the background. This was an interesting part of the conversation. I was told I should always have steroids on me...basically act as if I'm insufficient.  Unfortunately, I know this is a controversial stance that 99.99999% of other physicians will never support. However, I did a little googling, and it does appear to be the case that standards are changing and understanding is expanding with regards to adrenal insufficiency.

5. First physician to question if all the tumors and cysts and my health history are connected somehow. This is my question, too. My body is going in a million different directions all at once. I'm growing a lot of different things and it's all happening in a vacuum??? Naw. That would make me a pretty special snowflake. We just don't have any answers for this question...we need the NIH for that.

6. My DHEA is low, no question, but there's no way to really fix it and supplements are not recommended.

7. I'm guessing I'm going to end up with full time Secondary Adrenal Insufficiency at some point. There is little adrenal gland left. My next bout of SAI is likely to be permanent. We didn't discuss this, but between our conversation and my reading, this is my sense of things. Time will tell.

Next steps...wait for the letter, call obsessively about the letter...on all fronts. I've requested letters from all endos. I don't care who gets it to me so long as one shows up.

Also, I need to see an eye doc for my eyeballs.

And I guess call the OB's office because they seem to have dropped off the face of the earth. I had one call about the uterine ablation promising a date and then...crickets.

Last, time to get the next MRI scheduled. Let's see what the tumors have been up to since October.

Hip with the Hep

Saw the hepatologist and got the blessing to run another MRI to see how the tumors are behaving six months out. If it's all good, no surgical menopause.

Crossing fingers.

Come on tumors! Shrink!

At some point, something has to be in the textbook majority. I can't be the 1% outlier for every fucking thing, right?

That has to be statistically improbable, right?

RIGHT?

Tired

This was my week.

Monday:
Ob/Gyn appointment to set up uterine ablation because of the liver adenomas.
Corresponded with lots of hyperaldosteronism patients.
Researched an NIH study a lot of hyperaldosteronism patients apply to and sent an email to lead researcher.

Tuesday:
Heard back from NIH. They are actually interested in my case, but I still have things to do to qualify.
Got a phone call from the Ob/Gyn nurse to start the process of getting a procedure date.
Called diagnosing endo to start gathering what I need for NIH.
Called second opinion endo and got appointment moved up to next week.
Called the hospital to order records.
Went to hospital to pick them up.

Wednesday:
Met with primary care physician to update them and discuss NIH study.
Went for mammogram--it's time and I'll need to prove I don't have breast cancer for NIH.
Ordered more hospital records trying to find imaging for NIH.

Thursday:
Ran to hospital to pick up more records.
Spoke with pastor and explained everything. Somehow triggered a meal train that makes me both grateful and ashamed at the same time.
Took kiddo to the dentist for a filling.
Called endo again as they still had not returned my call.

Friday:
Endo's fellow called and we discussed what I needed for NIH to decide if they should proceed with me or not.

In between I homeschooled the kiddo, felt guilty about not working much, and didn't cook any meals--we lived on take out this week. I just couldn't handle cooking.

My eyelids continue to be swollen. My right eye seems to be enlarged now, but it's subtle and maybe I'm crazy. I almost went to urgent care, but am trying to hang tough until the second opinion appointment next week. I don't feel good, but I don't feel as heinous as I did last weekend. I keep hoping this will resolve.

Also, no one wants me to go to NIH. The lack of support is stunning and I don't understand it. I keep getting asked 'why do you want to go to NIH?'

Ummm...so I don't die because of y'all?

Medicine has been so god awful at diagnosing ANYTHING, and I have a strange pattern of tumors and cysts that I think medical care that looks at ALL THE THINGS just sounds SMART at this point.

I am not looking for 'you're fine' blow offs. I want empirical data that proves I'm fine. I don't care what medicine thinks, I want data. Prove that medicine works and that I'm full of shit. PROVE IT.

NIH will scan the shit out of me. Blood work me like a starving vampire. Genetic testing. AND I can donate my tumor (if they decide to take it out) to help others. I donated my liver tumor to research. I am HAPPY to give science more if they want it.

PLUS...it's free. It is a major financial burden to max out our insurance two years in a row. If I can save us money, I need to do it. My biggest fear is destroying my family financially with all the sick.

AND it's not an experimental study. No meds. No crazy anything. They are collecting data on these tumors so the care is standard but very thorough. No worries that I'll get cancer or lose a limb from some untested drug or anything.

Stockholm Syndrome

I'm no longer able to reliably tell a doctor anything. My idea of normal is so warped that I don't even know what to say anymore.

"Do you have muscle pain?"

"No."

What I fail to add is... "Not beyond the normal every day muscle pain."

See the problem?

Being sick is my normal. I can't report my symptoms accurately.

*face palm*

At least the blood work tells the story on this latest round of medical mayhem.

Conn Logic

Before I get into what I actually came here to bitch about today, I'd like to document some of the latest fuckery my body has produced.

I couldn't sleep on Friday night. My brain was overwhelmed with data and too busy making connections and synthesizing information to let me sleep. I also learned about the possibility of ending up at NIH late in the evening, which pretty much obliterated any melatonin my brain managed to make.

Too much to chew on.

Saturday we were due to attend an event at a local university about an hour away. I'd been prescient and arranged to have a friend join us and drive us down. So I didn't have to worry about driving, which was good because I was barely functional.

I almost canceled.

For all that I feel like shit the vast majority of the time, I mostly meet all my commitments. I mostly don't flake. However, I reached a point this weekend where I ran out of 'suck up' and had to cave.

Saturday though, I pushed myself to keep going. I tried to set myself up for success and took some prednisone, hoping it would kick me into normal like it did on our trip to Chicago.

We arrived at the event and I was just falling apart. Chest pain, weakness, profound fatigue, my brain wasn't working well, my stomach felt like all the tumors in there were swelling in unison. I was not making it.

Now, I'm used to my body's voodoo, so I did not immediately run to the ER, but I thought about it, and I knew the fact that I was thinking about it meant shit was real.

What can I do? What can I do? The thought raced through my mind as I drifted through the event in a fog known as WTF is wrong now?

I'd brought some granola bars so I tried that. Then tea. Then water. More water. Nothing helped.

I then decided to go for salt just because it felt so much like adrenal insufficiency and I figured my blood pressure was low. A bag of chips I didn't even like was the best I could do. I forced them down.

Voila! About twenty minutes later, huge improvement.

Since it was behaving so much like a weird adrenal thing, I added in sugar too.

Suddenly I felt human. Amazing.

I continued with my day, which was quite busy. The kiddo did her STEM career day thing at the university and then we hustled to her home school band concert. After that we went out for dinner where, scanning through my phone while waiting for our food, I realized, I was scheduled to teach Sunday School the next day.

I started the process of mentally preparing myself to slog through that. I was starting to wilt again and just felt off in general. The last thing I wanted to do was anything at all, but I'd made a commitment.

It was the hubby who gave me a reality check. "You don't feel good. Why are you going? Tell them you're sick."

A light dawned. Yes. I could call in sick. It hadn't even occurred to me. I've managed to avoid it so far, but maybe this one time I could give myself a break. So that's what I did.

Which was good, because I don't feel all that much better today. I woke up with huge, swollen Dumbo-esque eye lids, I assume from yesterday's salt and my energy is in the toilet. My brain is struggling. I set off a family panic that had us all looking for my phone when it was in my pocket. I've missed little details that caused little accidents. It's just not a good time to try and make me go forth in the world and function.

I hope I'm making sense so far actually.

So that's been the weekend. I hope tomorrow is better because I need to drive to a doctor's appointment.

I will also be calling the NIH. Thank god for patients who blaze a trail and leave sign posts. There's a big study for primary hyperaldosteronism, and if I qualify, that's where I'll be as things stand now.

Further, I'll be calling to ask to be added to the next endo's wait list as I think sooner is better. And calling the primary doc to set up an appt there for anything I need to do for NIH if I can't get into the endo faster. I'm going to do a basic blitz of doc appts to try and hack the process and get 'r done.

My blood pressure went high in 2010, but my HPA axis quickly suppressed and I didn't need bp meds for a while. Once my system was working-ish again around 2013, I went back on meds and it looks like in 2017 I started spironolactone.

Sooooo here's the deal...

Usually, if your hyperaldosteronism wasn't properly managed past a certain amount of time, you're kind of SOL and they won't do surgery (at least based on my reading). On paper, I had improperly managed hypertension for around 7 years, but if you dig deeper, the secondary adrenal insufficiency changes things. Predinsone is anti aldosterone and therapeutic so hopefully, that will help me qualify for surgery (if I opt for an adrenalectomy).

Either way, I'm so dang symptomatic of *something* being way off that I hope there will be serious consideration given to removing the tumor.