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Rough morning after 2 weeks of smooth recovery

Been feeling better than anyone could have imagined, with having pulmonary embolisms in both lungs. My lung sounds and functions were clear, my ‘spells’ less so- I felt fantastic… until this morning when I woke abruptly this morning.

I woke up at 6 am, sweating and not able to catch breath. It’s 2 weeks since I was diagnosed with bilateral PEs and I haven’t had a ‘spell’ like this in over a week. I’d been feeling better.

I feel like it burns all the way into the middle of both lungs, hard to catch an inhalation, feel like I have to cough phlegm, but nothing.

My bp is lower than normal 102/80. I woke with tachycardia (fast heart rate) over 120, that went down to the 90s.

I’ve not had spells this bad since the hospital. My pulse ox reads anywhere from 93-98, depending.

I still can’t take a deep breath right now… it’s getting better, but it’s scary nonetheless.

I don’t drink, don’t smoke. I just started getting my steps back up from nil to 7k the last three days. I’m on the ketogenic diet.

When they said recovery is a process with pulmonary embolisms, they were not kidding. I can have relatively normal, excellent days- then BAM! Scary, back to square one.

Some folks in my support group say it takes months to years to recover.

My stubborn self was hoping for WEEKS. I push myself too hard. I am depressed, as much as I can be. Mostly because I don’t like to be idle.

Saw my gynecological oncologist this week and everything in that area is looking great since the hysterectomy. This surgery caused my PEs, btw.

I am too ornery and cantankerous to die. Too much to do… and I have a child to care for.

I refuse to succumb, but if anything happens to me, tell my baby I loved her.

So far, I am told I am lucky to be alive as it is. For this, I am absolutely grateful.

I have so many people I love and have loved. I don’t want to go anywhere.

I want to celebrate being alive. 2018 was rough. I am not the only person in my family to nearly lose their life in a sudden accident this year. We are blessed to be here right now.

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Bilateral Pulmonary Embolisms (blood clots in lungs)- in pain and in hospital, but still alive, so far

I haven’t been updating my hysterectomy saga, as I’ve been recuperating- or trying to.

Almost died this week, and am still in hospital. I have Factor V Leiden, a genetic condition that makes me prone to blood clots- and they formed after my surgery.

More:

I am in shock.

Dr came in, they found two blood clots, on either side of my lungs. One had already burst into many bits- or ‘fillings’-I am being put on Eliquis to dissolve them and must be on this med for at least 3 months… then I see the hematologist again after.

It feels like pneumonia or bronchitis with a bloody copper taste in my mouth- stabbing pains, numbness, shortness of breath, and chest pains.

They are likely a result of my surgery and Factor V Leiden.

I am very fortunate, as they somehow bypassed my heart and didn’t kill me instantly. I had been having chest pains and difficulty breathing everyone at first presumed was anxiety.

They are keeping me at least another day or two for a heart study, to make sure I don’t have a hole in my heart.

(Update: heart is great, no holes)

MRI of brain is clear of stroke, thank goodness. My headache is still crazy bad, so they are going to give me toradal once and put me back on my usual bp meds.

I KNEW something was wrong- when they say ‘feelings of doom’, it is real. I was worried I wouldn’t be leaving here at one point today. My chest hurt so badly. I try joking things away, but this is still a bit of a shock to me.

As of Aug. 9, still in hospital. I just had another chest xray, pain comes and goes and I sometimes feel like I am suffocating. Doc says this is definitely from my surgery. Even on lovenox injections, these can still form. SO scary.

FYI, I am not wanting to die.

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When I am coherent again, I have to talk about the body shaming going on STILL in 21st century reproductive healthcare

When I am coherent enough, I am going to blog some super TMI issues re women’s health post hysterectomy.
 
I am really shocked and alarmed by the ignorance of the ‘counselors’ at my oncologist’s. When describing symptoms, after having to google a lot of things on the wonderful site Hyster Sisters, I had to refer the damned PA to the site.
 
Every time I mentioned something, her response was “I never heard of that”. I felt body shamed. I had to tell her to go to the web boards and google it herself, so she would not have to use those words again with someone else- someone perhaps a bit more trusting of her doctors and less able to do their own research.
 
Same thing happened in Borgess after I couldn’t urinate when the catheter was removed. I had a male AND female nurse with me and I said:
 
“This is a bit TMI, but the only thing I can liken it to- and I’ve never had any issues peeing after previous abdominal surgeries- is when a person has an orgasm and cannot pee after from the swelling”
 
Well, shit. The female nurse turned BEET RED and I was left with the male nurse, who was patting my hand and commiserating with me. The female never came back, btw.
 
WHY are women in the 21st century STILL too scared to talk about their bodies?! WHY is it taboo to mention things to your own health care providers?!
 
Eff this shit. There needs to be a change.
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today’s post surgery updates

1. no, I am not well enough to do x, y, z
 
2. I am in pain, still. Called my doctor, waiting for a returned call.
 
3. If you’ve asked how I am, I am mostly sleeping. If you haven’t asked and think I should be recovered from this now, then f*ck off. Forever. Don’t pass go, don’t collect $200 dollars. Not having a good day today.
 
4. I cry a lot. I didn’t expect that part. This wasn’t easier than gallbladder or c-sections. Maybe it was the fact that they took my cervix and tubes that made it a bit worse- or the fact that they had to shove a huge piece out of a too small incision, from what dad and R told me (as I’ve not spoken to my doctor since before surgery).
 
5. I feel like I’ve been stabbed in the abdomen multiple times and I am still bleeding through the dressings.
 
6. I am not dead, people can text me or message me. Unless you’re one of the few that seems to want a reading, then you can forget I have a number.
 
7. My belly swelling is going down. It’s bruised nicely.
 
8. Food is gross. All food. I had to negotiate down to 1 piece of toast this morning to take my pain meds. I don’t feel the need to eat two pieces of what taste suspiciously like charred assholes, hair still on.
 
9. Told R to stop trying to give me a menu. If I have to eat food with my meds, just bring me the minimum and don’t torture me with the prospects.
 
10. GasX is amazing. If you ever get pumped full of CO2, you will want to eat these things after, just to keep you from screaming in pain. Gas pains are hideous.
 
11. Please send me funny memes. Anything funny. IDGAF how tasteless. It’s boring being bedridden.
 
12. Pooping is miraculous after abdominal surgery- and appalling. All hail the workings of the kishkes. Once they start functioning again, it’s like the heavens have opened up. If the ‘heavens’ were closer to your rectum, that is.
 
13. I cannot discuss food right now, people. I don’t like it, possibly for one of the rare times in my life. Even the thought of it makes me wanna puke.
 
14. I love coffee. Coffee and tea are the only two things keeping me sane right now.
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off I go to the slaughter house, I mean hospital- hysterectomy day…

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sleeping toddler, on a hotel bed covered in My Little Ponies

Mumu on, check.
No makeup/lotion/nail polish/perfumes, check.
Jewelry off, check.

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I have to be at check in at the hospital at 7:30 am- it is about 20 minutes away from hotel

They say to expect my tum to be swollen a few sizes larger, from the gas they pump into the torso, after surgery.

I don’t know if I stay overnight or not.

I really know nothing.

I am flying by the seat of my pants on this one.

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No coffee for me 😦

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Mourning the impending death of my uterus

 

Not only am I creepily naked and sobbing in the above photos, I am also disgustingly smearing my lipstick, so that it symbolizes the last period I will ever have in my life.

A lot of women hate their periods. I really didn’t until the periods became unbearable. Going into the crone phase, even if it is partial, scares the shit out of me.

Pretty emo for someone of a half-century, I will admit. It’s my crotch party and I’ll cry if I want to…

While my first inclination, as always, is to make snarky jokes about the robots coming for my lady parts tomorrow- I can’t stop crying.

Words fail me.

The fact that I’m having essential organs- parts that are meaningless and useless now- that somehow DEFINED THIS MEAT SUIT for me- removed permanently really is messing with my brain right now.

If I leaned more towards the esoteric, I could just say this is all illusory… this body, this gender, this glove we wear.

I can’t fucking do it. I am grieving, mourning- an anxiety ridden mess.

All the worst case scenarios run through my head:

What if I die on the table?  What if I am that small percentage that has cancer and it causes it to spread?

https://www.usatoday.com/story/news/nation/2014/02/18/hysterectomy-laparoscopic-morcellation-amy-reed/5347093/

Luckily, now very few hospitals combine DaVinci robotic surgery with morcellation:

https://www.hystersisters.com/vb2/showthread.php?t=588404

The entire thing is usually pulled out of the vagina, presumably after the robotic bits sever the organs from their places.

Still, fucking scary.

My friends and family who have gone through this say it’s a piece of cake- I will no longer be in constant pain, I will love it, etc.

As a consolation prize, they will take my fallopian tubes and keep my ovaries- as long as I agree to ultrasounds every 6 months to monitor the cysts. This means I can go into eventual natural menopause and not instant menopause, as I have Factor V Leiden and can never use hormone replacement.

Also, what makes us female? Is it biological, is it physical, is it a dangly bit of spongy flesh in our innards- is it a hardwiring of of hypothalamus? Is it a spiritual choice made prior to incarnating?

WTF IS it?! Do I become some gender fluid, non-pronoun using being after this?

I don’t know why I am so hysterical right now- I just know that I am.

I know I won’t cease to be ME, who or whatever that may be (unless I die, of course).

I surely didn’t freak out like this when they took my gallbladder almost 2 decades ago.

I’m just scared, I guess. Scared shitless.

My stomach is fat, like a woman 4-5 months pregnant- the adenomyosis has me swollen like a tick on a dog.

I feel miserable. This procedure is supposed to make it all better.

I hope it does.

Losing pieces of ourselves, I wonder if zombies feel the same way, if they were real and could think.

“Oh, shit, my whole crotch just fell out… need more brains…”

Yeah, I need more brains.

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Conversations with the oncology social worker… or, what happens to my lady bits after they take them? PLUS UPDATE- SHE CALLED BACK WITH THE ANSWER AND GAVE US MORE QUESTIONS!

Oh boy.
The oncology social worker called to ask if I had any questions regarding my upcoming hysterectomy.
I really could not think of anything… then I giggled, because I DID have ONE question- and I asked her:
“Um, what happens to my uterus after? Do I take it home and bury it under a tree? I mean, they let you take your placenta home now after birth… what’s the etiquette with losing your body parts?”
I went on to further explain that I didn’t want to eat it or anything- like some do with their placentas- but I wanted to make sure they didn’t do something with it, like turn it into Soylent Green.
The lady on the other end of the phone stuttered a bit and said:
“Wow, nobody’s ever asked me this before- let me ask them. I think it goes to pathology for cancer testing and disposed, but IDK if you could get it returned to you… wow, yeah, let me ask”
I laughed and told her that it really wasn’t a pressing issue with me, but she continued:
“No, no- I really want to find out, too- I know a lot of people who take their placentas home. This makes perfect sense- no one’s ever asked me this”
I think I may have begun anarchy in the uterus removal trade today, inadvertently.
LOL… I mean, I was just curious. If they give it back, do I have to give it a funeral?!

UPDATE:

Megan, the social worker, called back not even an hour later with a reply!!

1. they used to let you take your body parts home with you, if you signed a waiver of some sort- but now you are no longer allowed to do so due to health and hygiene laws.

2. Megan and I then wondered what the hospital would rule (I like this chick) if, say, someone from an Asian religion had this surgery and needed the part back due to their belief in progressing in their Afterlife.

That was some interesting banter. I really like this office.

I speculated  that it would probably be a state’s law and hospital policy call.

For example, in the state of Michigan, you are allowed to opt out of vaccinations due to religious reasons.

Megan agreed. I mean, you could possible do someone irreversible harm by incinerating their spleen or what-have-you and not allowing them to sew it up in an embroidered cloth, simply because they’d believe they were not going to the Hereafter because they didn’t have all their bits.

That could mean a lawsuit.

I then absolutely assured her that they could have my troublesome uterus, as I didn’t want the damned thing, and that this conversation in no way reflected my personal beliefs.

She laughed and told me I needed to go to law school and come work at her hospital.