Surgery

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The day had come, the day was here that I fought so tirelessly to get to.

I was finally having my dual endometriosis excision surgery, I was having 2 surgeries with 2 surgeons in one operation.

I got to the hospital at 6am the mooning of surgery, surgery was at 8am and I had to be there 2 hours prior for patient check in and pre op.
This meant I was up at 4am to shower and make sure all my things were organized, and then leave my house at 5am since the hospital is an hour away.

We got to the hospital and I registered myself, which after that I was sent to pre op.
I got gowned up, given some pre surgery pain meds (apparently it helps with the pain after) and I got beautiful knee high socks on!!

Once all of that was done and my patient intake information was inputted I got escorted to THE BEST CHAIR IN THE WORLD!!!!
They had these new paper gowns that you wear underneath your hospital robe, she told me while I was changing that they are heated gowns and I didn’t understand since they were paper. OOO MMM GGG!!!!
When I got to my chair she pulls out a tube from a machine attached to the wall called “The Bear Hugger”.
It is essentially a hair dryer connected into your paper gown and on the inside of your gown these pockets fill with warm air, IT WAS GLORIOUS!!! and I want one in my house!!!

After that I got my IV in, and we were well on our way with an hour left until surgery.
Waiting there with my husband, my teams started to trickle in to see me.

First, Anesthesiology.
They came and opened my file, made sure everything was in order. We talked about what was going to happen and we discussed a thoracic epidural to be put in while I am in the OR before surgery.
Everything was good to go and they left.

Second, Endometriosis Excision.
I had a Dr and 2 fellows and half way through our briefing my surgeon popped in. We talked about what was going to happen during surgery, I asked a few technical questions and then off they left.

Third, Thoracic Surgeon.
He came in and spoke with us, he made it seem like it was going to be the easiest thing to do ever hahaha!!
We’re gonna go in look around take anything out and you’re done, just like that.
We decided to forgo the thoracic epidural.
My thoracic surgeon advised me that its my choice either way but in his opinion he didn’t think I would need it, so I took his advice.

I walked into the OR and there had to have been about 15-25 people roughly.
I went and sat on the OR table while I waited for all the surgeons of my teams to arrive, once they did than I laid down as they de briefed on what was going to happen during surgery and at this time they started to sedate me.

My endo surgeon was showing me photos of his dogs and his doctor was telling me think about a sandy beach with a margarita.
I remember thinking to myself, when I fall asleep I feel like everything is going to be chaos and it will be loud and lots of movements. Who knows, it may be true but I was happy sleeping during all of it.

They put the oxygen mask on me, and before I knew it I was being woken up in recovery.

Advocating For Yourself

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First off let me start this by saying that I LOVE MY MUG!!!
I have been wanting this mug since the day I started my Rea Dunn collection, however it was only available in the states.
One of my best friends got it for me for my birthday and I am in love!!

Now for the reason why I am here;

Let’s talk about advocating for ourselves for a minute. ⁣

We advocate so hard for ourselves for proper surgical treatment, for proper care and guidance, but it seems that at the moment we get that surgery date in our calendar our self advocating selves quiet down. ⁣

And now most of you are probably thinking, obviously we stop fighting for what we want because we have obtained what we came here to do and get. ⁣
Would you think I am crazy if I said you’re wrong? ⁣

We have so much knowledge in regards to the gold standard of care.⁣
We have so much knowledge on excision vs ablation.⁣
We have so much knowledge on all the possible medications our doctors can prescribe to us.⁣

We have limited information as to what ACTUALLY happens during surgery.⁣
What tools are being used.⁣
What is going to happen in pathology to find the proper answers.⁣

There is so much more to the puzzle.⁣

With the help, support and guidance from a fellow science lover, Kate over @endogirlsblog helped me continue my advocacy last night. ⁣

After discussing An article shared in the extra pelvic Facebook page about the pathological findings of thoracic endometriosis, it got me thinking. ⁣

So naturally, as I do…I emailed the head of the pathology department at the hospital that I am having my surgery at on Thursday.⁣

I asked the questions that I wanted the answers to. ⁣
I asked the criteria of process for getting a positive diagnosis on thoracic endometriosis as there are 3 factors included. ⁣

Thoracic endometriosis has been known to be difficult to get a positive diagnosis on, in speaking with fellow thoracic patients as well as literature I have read, it’s not as easy to diagnose as pelvic endometriosis. ⁣

This surgery has been a long time coming, and a pathology report of “inconclusive” just won’t sit well with me. ⁣

So I am here to tell you to advocate for the answers you want even after surgery.⁣
Advocate to press for more answers if you’re unsure or unclear.⁣
Ask the questions, and if someone doesn’t have the answer than find someone who does. ⁣

No one will fight for your health except your self. ⁣
Knowledge is power my friends.⁣

How I Really Feel

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I have been asked a lot this last week “how are you feeling about your surgery?”

And honestly it’s such a loaded question I don’t even know where to begin.
Even sitting down to write out this blog post about it has me feeling over whelmed. 

Its as if my mind is running a mile a minute and my fingers grazing along the keyboard just can’t keep up with the over whelming merry go round that my brain is currently in.

I am keeping myself beyond busy, like BUSY!!!
mentally, emotionally and physically.

My job is busy as always, I am keeping my free times filled with endo advocacy projects as well as focusing on future projects as well. 

I guess it’s a default I am putting my mind into so that I don’t really sit back and think about the surgery itself. 

One thing my husband said to me yesterday was “I am feeling okay about it because its all done laparoscopically, they don’t have to open you fully up” 

I laughed internally while I smirked at him. I wasn’t going to be the one who tells him there is still risk with any surgery no matter how big or small.

If that is what is keeping his mind at ease that i’ll just let him be with it. 

But how do I feel about it, and I am not talking about how I feel about it in a basic sense but like how do I REALLY FEEEEEL about it…that’s been the hard question to answer lately.

I am nervous.

I am excited.

I am petrified.

I am anxious.

I am relieved.

I am happy.

I am smiling while I am also ready to vomit.

That sums it up in a nutshell.
It’s not confusing at all is it haha!

Any surgery is nerve wracking lets be honest. No one actually ENJOYS surgery, but unfortunately its inevitable. 

I am nervous over the fact that its going to be in and around 6-8 hours. My longest surgery to date was 3 years ago and that was my hysterectomy coming in at just over 3 hours.
This one is over double that time frame, not that I am going to notice the time difference but its still something to think about.

I am excited to have this done, I am excited to have answers, I am excited to get off of orilissa. I am excited to gain some relief and to hopefully get back to doing the things that this disease has ripped from me. 

I am petrified over the fact that someone is going into my lung cavity, it just gives me the jitters when I sit back and think about it. 

I am anxious of the anxiety I will feel while waiting the 2 hours as I prep for surgery. I remember it so well the last 3 surgeries I have had, and it has to be the worst feeling in the world. The pit of your stomach is turning. Your hands are freezing. You have a horrible taste in your mouth and you are utterly exhausted. 

I am relieved it’s happening at the hospital that it is happening at. Its one of the top hospitals in Ontario, I always joke and say when something goes really wrong its the hospital you get sent to, since I am already there its going to be okay! (for my fellow Ontario’s I am having surgery at McMaster in Hamilton)

I am happy that I am truly in amazing hands!
I couldn’t ask for better surgeons!
I have the longest standing excision specialist in Canada as well as a well known highly trained thoracic surgeon as well. 

I am smiling thanks to all the support that I have both physically beside me as well as my endo community online cheering me on, but I am also ready to vomit from all the things previously said. 

I am thankful for my blog along with my social media platform that I can document this journey. 

That I can educate and show other people in the same situation as myself that they are not alone. 

So here’s to surgery!!

Here’s to all the positive vibes, spoons, healing energies, powers above, skill, education and a dash of luck; that everything will be just fine!!!

Surgery in a nutshell

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Surgery is in less than 2 weeks and thats filled with all the feelings!!!

For those of you who aren’t following me via social media, I will explain what surgery I am having, since its a bit complex.

I am having a combative surgery ( 2 surgeons, 2 surgeries at the same time) like a tag team OR haha!

I am having pelvic excision;

Which is where my endometriosis excision specialist will go inside my pelvis cavity through the 5 scars I have from previous surgeries (belly button, top of pubic bone, both hips and slighter higher up on the right hip) and he will fill my abdomen with C02 gas to give him more visible area. He will use laparoscopic tools and a robot to properly excise and remove any and all endometriosis he finds.
After my hysterectomy we are aware that I have endo on both my pelvic walls, my bladder and my pouch of Douglas. Where it has grown in the last 3 years will be interesting to find out, he will also be looking at to see if I have any endometriosis on my diaphragm. 

My thoracic surgeon will be going into the right side of my chest cavity. He will put in laparoscopic instruments through small ports between my ribs and my armpit. He will be looking at my lungs, chest wall and diaphragm and removing any endo lesions he finds on the right side.

I do have small left sided symptoms so I have asked while I am in for surgery if he can scope my left side since we are already there, after my right side is done he will put in a scope and check out my left side. 

I will be staying in the hospital anywhere from 2-4 days. 

I will have a chest tube on my right side and possibly my left side depending on what happens on the left. 

I will be in the hospital up until the chest tubes can be removed, once they can come out and drainage is done than I get to come home!!! 

So thats it in a nutshell….

The Excitement That Lays Ahead

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With less than 3 weeks until surgery, to say I am excited would be an understatement.

To hear someone openly say they are excited for surgery is beyond odd, trust me I know.
But if you felt the way that I do each and everyday and surgery could give you 60-80% relief for anywhere from 1-7 years, I think you would be excited to!

I am not one who gets scared, anxious, worried or upset going into surgery.
Sure there are the normal jitters of having to wake up at 4am to drive an hour to be there on time. There is the sterile hospital smell that we all have come into contact with at some point and time and usually relate it to a past experience. Then there is the whole IV situation, and if you enjoy IV’s, your strange!! haha!

I don’t have to go through the IV process, my veins in my hands are to small for IV’s to work, so I have always gotten one in my arm in the OR after I lay on the table.
I think the one thing I do have to say I enjoy most is being put to sleep.
Someone is forcing me to have a nap, and I am totally okay with that!

I am a very literal person, so as scary as it all might be, I am in great hands with great surgeons in an amazing hospital and hoping to get the best relief possible.
I am receiving the gold standard of care for endometriosis treatment and that is priceless!

I am not filling my head with so much false hope that it is an unrealistic expectation.
I am not going to sit here and tell you that I will never feel this way every again.
If I did, it would be lies.

This is for relief. This is to gain my daily life back. This is to give me the relief I need to gain the energy to pursue my passion stronger, harder and louder.

I will have flare days after surgery.
I will have hard days after surgery.
I will have symptoms after surgery.

They will be far from the severity of what I deal with now.
They won’t happen each and every day.
They will appear 1-2 times a month.

That I can handle! That I can manage! That I can navigate.
Not having it take over my daily life. Not having it impede each and everything I choose to do. Not to have it dictate to me what is going to get done in a day and what isn’t!

I am scheduled for a combative surgery in less than 3 weeks.
I am going to have 2 surgeries with 2 surgeons in one operation.
It will be 6-8 hour surgery.
It will start off with pelvic excision of endometriosis. He will go into my pelvic cavity and remove any and all endo that is found in my pelvic, abdomen and diaphragm.
after my thoracic surgeon will perform VATS (video assisted thoracic surgery) he will go in through 3-4 small holes between my ribs to access my thoracic cavity and remove all endo from my chest wall, lungs and diaphragm (depending where it is found). He will start on the right side as thoracic endo is predominately right sided, however he will scope my left side just to do a check while I am there and on the table.

I am excited for the recovery, I am excited for the time off, I am excited to heal.
I have a lot to heal from.
Not just surgery!
I have 18 years of this disease coursing through my body.
18 years of medications, 1 after the other after the other trying anything to take some symptoms away.
I have the past 2.5 years of thoracic endo raging on my body, pushing my mental capacity to its limits while challenging my physical abilities.
It’s been a lot of damage both mentally and physically.

Hopefully after it’s all said and done I come out a stronger warrior than I was going in.

 

Self Care; Selfish or Essential

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Self care is important.

I think its important for anyone and everyone. 

We live in such a busy society that we often put our jobs, partners, kids, pets and friendships before ourselves. 

Each new years eve I always made the resolution going forward to say no more often.

To say no to events, to say no to outings, to spend more time doing the things that I wanted to do or to do the things that fuelled my soul and filled my cup, and I never fulfilled the resolution.

It took a long time to get to this place, but I am here.

I think my disease made a lot of it happen for me.
At this point I need to worry mainly about myself!
I am at a point where my health comes before anything else, and when I say anything else mean it.
Before my husband, before my kids, before friendships and before my job.

Because the reality is and I think we understand the thought process behind it but until life stops you to make it a reality, we don’t seem understand it fully.

You can’t pour from an empty cup.

Theres a meme I see often spread through the endo community and it says
“Do you ever feel that your check engine light is on, but you just keep going through life like, ya its all good”

And as much as that is true, its also not okay.
We need to fuel our minds, bodies and spirits.
I think finding my passion, my drive and my purpose has changed a lot for me.
Its awakened something within me that I have never felt before.

But a thought that I have often is, when does self care become selfish.
I know the importance of taking time for yourself, to ground yourself, to refill your cup.
But at what point does it become selfish?
And does it ever become selfish?
Or is all of it selfish?

I think thats where society comes into play, self doubt comes into play, or constantly telling ourselves that we aren’t worthy of the time and care because we should be doing something for someone else because there is always a long to do list to accomplish.

Finding balance in anything is important, balance is key for any aspect of life.
I think self care balance is really hard to level.
Being chronically ill, I am constantly on the self care bandwagon.
But I also push myself daily to accomplish tasks.
Some that need done and others that don’t, but if I don’t do them than I don’t feel like I have accomplished my duties for the day, even though no one has those exceptions of me except for myself. 

I am often in the bath, heading to bed early, going for massages, going to pelvic floor therapy, or working on my social media platform.
Because all of those areas fuel different aspects of myself. They all help to fill my cup in all different ways.
But I am also noticing that since this shift, more is falling on my husband and more is falling on my kids.

And its not a bad thing, its just a change and change is hard. 

Once again no one has these feelings except for myself.
My husband is constantly pushing me to do all of these things and more, as he is always wanting me to be my best, happiest and healthiest self. 

My kids have not complained and I honestly feel like they are enjoying some of the independence it is creating for them. 

Find your passions, find the things that fuel your soul, and embrace them whole heartedly.

Find the time to put yourself first.
Find the time to fill you cup.
Find the time to do what you truly want to do.
And even though it may take some time, do not feel guilty for it.
A car can’t drive without fuel.
You can’t get coffee from an empty pot.
We can’t give our all when we have nothing left to give. 

Another Emotional Disaster

 

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To say this past week has been hard would be an understatement. 

I was an emotional disaster, and that’s putting it lightly.

I was up and down, side to side, I didn’t know which wave of what feeling was coming next, and honestly I didn’t know what to do and I didn’t know how to process it.

I am a very logical person when it comes to pretty much everything.
It takes a lot to ruffle my feathers, cause me anxiety or make me upset.

But this week, this week it didn’t take much at all to feel all those things.

I was upset with my self, I was upset with my outer appearance. I was upset with my disease, I was annoyed with my kids and I was pissed at my husband. 

FOR NO GOOD REASON!!

Don’t get me wrong, husbands and kids know how to push your buttons from time to time and my patience runs thing when I am flaring, so at those points it doesn’t take much to set me off. 

But this week was different. 

I had convinced myself that my husband was having an affair – when really he “worked late” because he was out buying my birthday present! *face palm*

I wanted to retract away from the world. 

I wanted nothing to do with anyone or anything. 

And that is NOT like me!!

I started to look back at things, and then it clicked!!
I had been off of Orilissa for 6 weeks this past Wednesday!

They say for medication it takes about 4-6 weeks to get out of your system, and boy were they right. I am pretty sure I felt the last leg of the surge in hormones. 

It all made sense, but that doesn’t mean it was okay.

The following day when I regained normalcy, it was filled with apologies. 

Apologies to my husband who is more patient, understanding and compassionate than any human I have ever met and I truly don’t deserve. 

Apologies to my kids for being short fused, grumpy and tired, which as bad as it is and it’s sad they had to learn this way, my disease has turned them into compassionate and empathetic kids. They have the biggest hearts and are genuinely concerned for other peoples feelings. 

So we are onto the next chapter of it all,

Dealing with the symptoms daily.

Dealing with full blown hormones.

Dealing with no longer being subdued into menopause.

I am seeing how effective it was to begin with, and I feel like this coming week will be the true test of how beneficial Orilissa was in my journey, or did it actually lose its mojo after 3 months.

Im holding on and warning my family for this rollercoaster.