Friday, March 12, 2021

Edna Has Left the Building!

Hello friends! 

Well, I finally have an update on my Edna journey for those of you who have been following along! 

On March 5th I had surgery to remove my pesky little pal Edna. If you don't know who Edna is, go back a post and give it a read... I don't want to bore everyone rehashing the details. 

Let me tell you, it was quite the experience being a surgical patient in the very hospital I work in. It felt really weird to walk right past my home unit and onto another to be prepped for surgery. My husband could not accompany me due to some of the policies in place because of COVID, so that was a bit unnerving. 

However, my surgical team was absolutely amazing. I knew and trusted that I would be in capable hands with my surgeon as well as the nurses and anesthesiologists. They all walked me through what would happen, which was nice because this surgery is not like anything I've ever been involved with in the unit I work on. The respiratory therapist got my IV on the first try (score!) and the OR was only about an hour behind schedule (double score)!

All I remember from right before the surgery was the nurse putting the mask on my face and the anesthesiologist telling me to let him know when I felt "different". Well next thing I knew was I was waking up in recovery raving to the nurses,

"I got the goooooood drugs. They gave me goooooood drugs."

I guess I had been saying that repetitively for 30 minutes before I even realized where I was or what had happened. 

Once I was settled in my room my surgeon came to chat with me, and let me know that Edna was officially gone and that she was being sent off to pathology to determine what exactly she was. I was also informed that unfortunately, they had to take my fallopian tube as well when Edna was removed. My surgeon explained that the weight of Edna was so much, that it caused my fallopian tube to twist on itself 5-6 times, and that he was not able to safely remove Edna without taking my tube as victim. 

Now before anyone else says it I'm going to... yes it could have been worse. And yes, they could have taken my ovary instead of my fallopian tube. But it was still hard to hear that I literally lost one of my reproductive organs. My fertility has always been a huge question mark, but this is just one more thing that has been taken away from me that is going to make our journey that much harder. And honestly, that was hard to hear. 

I did some research on twisted fallopian tubes (because I'm a nurse and a huge nerd) and it turns out that it has an incidence rate of about 1 in 1.5 million people, according to The Journal of Clinical and Diagnostic Research. So I told my husband that he was literally married to one in a million (haha!). I really had to laugh. Like a good gut laugh. Because everything I have faced so far in life has been "rare" or "uncommon" or "not well understood" and this really just seemed par for the course. 

Buttttttt to throw in some good news, I heard from my surgeon today! The pathology came back on Edna and.....

Drumroll please.....

Edna is an "ovarian serous cystadenoma", which is just a basic cystic structure... no cancer for meeeee!

Yippee! So I will continue to take the recommended time off work, and will see my surgeon again next month for a follow up visit. 

Thank you to everyone who has sent flowers, well wishes, has called to check in and has sent love and prayers. I truly appreciate it. 

Until next time friends,

Court
(and not Edna)





Monday, January 18, 2021

Edna Update

Hello friends! It has been a while since I last updated you, or even wrote anything on this platform! Up until about 3 months ago everything was really stable with my health, but ever since September I've been having a few issues...

Back in October I had an ultrasound of my abdomen for some ongoing lady issues, and for those of you who follow me on social media, you would know that they found "mass" growing near my right ovary. Her name is Edna. Edna is quite sizeable, measuring in at 4.7 cm x 2.8 cm x 4.5 cm. Originally they thought Edna was an endometrioma, so I was sent for an MRI to confirm what exactly she was and see if she had wreaked any havoc on any surrounding structures. 

I just got my MRI results back in the last couple of days, and I've honestly really struggled with understanding and coping with what the report said. Overall, the MRI was not definitive in what exactly was going on in my abdomen, but this is what we know about what Edna could be: 

1. A neurofibroma (logical, considering I have Neurofibromatosis... ovarian neurofibromas are very rare manifestations of NF, but I have numerous rare manifestations of my condition)

OR 

2. Cystic ovarian neoplasm 

Now that second option I had to really wrap my head around and get him to explain to me multiple times. What in the heck is that? Neoplasm? He very gently told me that a cystic ovarian neoplasm is a tumour of the ovary (duh) that can either be completely benign, or has a chance of being malignant. 

I honestly don't think I heard a lot of what he said after he said the word malignant. It kind of felt like my entire world stopped. 

I think my doctor could sense the fear and confusion in my voice when he said the word malignant, and he very gently told me that he thinks that cancer is low on the list of what it could be. He said considering all of the hormone issues I have going on, I likely don't have enough hormones circulating around to cause those issues in the first place. He did however, say that "nothing is impossible" considering how complicated my medical history is. Still, despite the emphasis being put on the likelihood it isn't cancer (the emphasis was out on this a few times), my mind couldn't help but wander and start freaking the heck out. 

What else did the MRI show about Edna? Well, believe it or not there's more. From what I can gather from the rather intense medical jargon, Edna is growing from my fallopian tube into my ovary (rude of her to take up residence in two of my organs, right?). On this report it measured 3.7cm x 4.8 cm x 4.8 cm, which is different than the original measurements. Now why is that? Well, I don't really know to be honest. I would like to believe it could either be based on the fact that the MRI is more accurate, or maybe just a difference in radiologists, maybe a mistake was made on one of the scans... or in all reality it could be that it has grown in the last 3 months since it was last scanned. Who really knows! Also, I'm not entirely even sure which ovary it's growing into considering the ultrasound says RIGHT and the MRI says LEFT....

There is a lot of uncertainty here, and I won't have any real answers until I see a gynecology oncologist (as per the recommendation of radiology). I'm currently holding a vigil near my phone, hoping it will ring and be a specialist that can point me in the right direction... I was told by one of the doctors I work with (whom I cornered and asked a bunch of questions the other night at work to) and he explained that it is often just a formality that they put "gyne-oncology" as a recommendation for follow up.  I may not even see gyne-oncology, and just have my case sent to them to have it reviewed.

In addition to all of this stuff, my MRI also showed that I have a smaller "simple" cyst on my right ovary (which wasn't mentioned on ultrasound), as well as several small cysts in my left kidney (also not mentioned from my ultrasound). A neurofibroma was also found to be taking residence in my lower lumbar spine, which unbeknownst to me has  been there since my last pelvic MRI in 2010 . 

How is Courtney coping? Meh. I am really trying my best not to stress until I am given a reason to stress, but man that is HARD. I am the kind of person who overthinks everything (I mean literally everything), so it has been hard controlling my thoughts and emotions and keeping myself reigned in. I've dug myself a nice little rabbit hole and keep thinking worst case scenario... which we know is not likely! 

I promise that once I know something, I will post an update. Blogging has always been a very therapeutic way for me to deal with my thoughts and emotions, and sharing my story has brought me a lot of peace in the past. 

So keep your fingers and toes all crossed friends that we are just dealing with a neurofibroma or benign mass and nothing more serious! 

Much love, 

-Court

xoxo

P.S. Here is a photo of me at my wedding because it was the happiest, and best day of my life!



Sunday, July 12, 2020

Emergency Room Extravaganza

Well friends, I made a rather unfortunate trip to the Emergency Room at the beginning of the month. On Canada Day I had this really excruciating pain on my left side right under my rib cage that radiated to the back of my spine. To make a really looooong story short, my fiance pretty much had to drag me to the Emergency Room to be seen by a doctor after he found me curled up in the fetal position on the floor of our bedroom. 

Initially the doctors thought that I had kidney stones, so after some deliberation they decided to send me for a CT scan. I've had so many CT scans/x-rays/MRI's there was a bit of concern about my exposure to radiation but ultimately they decided it was in my best interest to go ahead with the CT. 

Much to my surprise, the CT came back completely clear... meaning I did NOT have kidney stones. I was relieved, but also really frustrated because we still didn't have a reason as to why I was having pain. The ER doctor looked through my old ultrasound reports, and noticed that on my last scan they had found an ovarian cyst that was measuring "more than 4 cm"... this cyst was not noticed on my CT scan (meaning they think that the cyst had ruptured)

Now, I've had some really good experiences with physicians during my journey through the health care system, and I've had some really negative experiences. I've been accused of being a hypochondriac. I've been accused of making up my symptoms. I've been accused of attention seeking... all of these experiences make me reluctant to seek help when I need it. I have this unrelenting fear that people are going to see me, or look at my history and think that I am making things up for attention. It prevents me from seeking care when I need it, which I know is a horrible thing (even worse because I am a nurse)! I was so afraid of going into the ER and going through all the tests to find out that nothing was wrong... which is SO SILLY! I told this to the doctor in the ER and he said something really profound to me:

"You know your body well. You have been through so much and have dealt with a great deal in such a short amount of time. Whenever something is out of your norm, or whenever you feel like something isn't the way it should be, you need to seek help. And that is what you did today. There are a multitude of things that could go wrong with your condition, and you know your body best and when you need to seek help." 

He didn't once make me feel like I wasted his time, or that I was merely seeking out attention . He made me feel heard, he made me feel valued and he made me feel understood. That. Is. So. Huge. 

So I felt pretty crappy for a couple of days, but I have been back to normal for the last week! I haven't had any pain or weird symptoms so I think I am totally on the mend. 

What I guess I am trying to say with this post, is just seek medical attention when you need it. Don't hold back. Don't fear being judged. Doctors, nurses and other health care professionals are there to HELP you, not judge you. 

Stay safe everyone! 

Courtney 

Tuesday, March 24, 2020

Just Stay Home

Well, I think it's safe to say anyone reading this blog right now is probably aware of the global pandemic. I'm about to get up on my soapbox and preach social distancing so if you're not interested here is your warning! There are lots of cute puppy and kitten videos out there if you would rather (or are tired about hearing about COVID-19, because lets be real... everyone is talking about it).

As some of you may know, I am a registered nurse. I am currently working on the front line of this global pandemic. I go to work everyday, unsure of who I will be caring for or what I will be walking into. Our already struggling hospital is already stretched to the max with the number of beds available (not enough to be clear), lack of staff and not enough doctors to go around. Now to add this to the mix, you could say we are all feeling the stress. 

I work in labour and delivery, which for the most part is probably the happiest place in the hospital. On most days we welcome new life into the world, and see the faces of parents meeting their babies for the first time. The joy is overwhelming, and it's what keeps me coming back shift after shift. 

However, this global pandemic has each and everyone of us on the edge of our seats. We screen everyone who walks through the doors. We've limited visitors. We won't let children on the unit. Each patient gets ONE support person to stay with them for the duration of their admission. Family members do not get to see the new additions to their families until long after they've been born. Patients have told me they are scared to come to the hospital because they do not want to "catch" the virus, which in all reality is so fair. These moms have had their lives turned upside down because of this virus, and my heart hurts to see how stressed this had made them. This is not how it is supposed to be. 

What can we do to make this better? I'm sure you all have heard it time and time again, but PLEASE stay home, or at least practice social distancing if you cannot. The curve will never flatten if people do not start taking this seriously. Hospitals are going to run out of masks and PPE if this virus does not stop spreading. We are already overwhelmed, please help us by doing your part and STAYING HOME! It will likely be the one time in any of our lives we save the world by simply sitting at home watching Netflix and eating snacks... seriously!

And let me be the first to say, I understand it can be hard to stay home cooped up in the house day in and day out. I get it. I love being around people and it is SO hard to not spend time with my friends and family right now especially in times of high stress. I totally get it. Yesterday was my birthday and instead of spending it with family I only got to see them over FaceTime. My Mom dropped flowers off at my house and had to sing me "Happy Birthday" from the end of my driveway. But the longer we don't listen to the recommendations to social distance, the longer we will have to do it. 

I'm gonna hop off of my little soapbox now, and I am going to include a link for some funny animals because we all could use a laugh and smile right now. 


Stay safe and healthy everyone!

Much love,

Court 
xoxo


Friday, February 7, 2020

Eff You Anorexia

Alright friends, time for me to put my vulnerability out there this week. I have written, rewritten, deleted and pondered over this post for sometime now, fearing putting my "imperfections" out on the internet for everyone to see.

Today marks the end of eating disorder awareness week, and I wanted to share a little bit of my journey with you all. Those of you who know me well, and any of you who have been long time readers of my blog would know that I have battled anorexia for years. I was first diagnosed at the age of 15, when things with my health started taking a bit of a nose dive. After being diagnosed with a brain tumour, scoliosis, chronic headaches and an undiagnosed (at that time) hormonal condition, I felt completely and utterly out of control of my life. I desperately sought out anything that I could have some say over, and that ended up being food. My disordered behaviours started out small and unintentional. I cut out foods high in fat, and then that was followed by foods high in sugar. I cut out foods high in carbs, and anything that was not seen as "healthy". Seems silly, but made sense to me at the time.

One thing that I really want to clarify about eating disorders is that they are NOT I repeat NOT about weight loss. They are about control. I would see the numbers drop on the scale, and it was almost like a high watching those numbers get smaller and smaller. There was so much satisfaction knowing that I was in control of that number. I had a say in what the scale said. I was FINALLY able to control something in my life.

My disordered behaviours soon spun completely out of control, and I literally turned into a skeleton. I weighed a mere 80lbs at my lowest weight. I was constantly cold. My hair was falling out. I would be out of breath just trying to get dressed in the morning because I was so malnourished. I was manipulative and deceitful, because I wanted to hide this disorder from those around me. I got to the point I was afraid to put lip chap on because I did not want to consume the calories from it. My life was falling apart, all because I wanted to "control" something.

Today I am weight restored, but still really struggle with disordered behaviours at times. During times of stress, I unintentionally avoid food because for some reasons it's a comfort measure. Why? I don't think I would even be able to tell you. When I was at my sickest with anorexia, ignoring and avoiding those intense hunger pains was a victory in and of itself. It helped me cope. It showed me that I was strong. Avoiding those chocolates, or avoiding those brownies at work meant that I had some kind of say and I thrived off of it. I still go back time to time to these behaviours, but what is different now is that I am cognizant of them, I recognize that they are wrong. I am blessed with an incredible fiance who can tell when I'm struggling, and will bring my a bowl of popcorn or will whip up my favourite pizza when he can tell I am stressed. I am so beyond blessed to have someone who always looks out for me.

I am posting this picture today as a big "eff you" to anorexia. I have NEVER done anything like this before, because I have been too self conscious of my body. I pick apart all my photos, looking for each and every flaw. I look for the imperfections and absolutely pick myself apart for them. Today I am saying NO MORE to that! This is the body that got me through the diagnosis of my brain tumour. This is the body that got me through nursing school. The body that lets me climb up mountains, and kayak across lakes. It helps me deliver babies, and will be the vessel I walk down the isle with to the love of my life. THIS body is worthy of love, THIS body is worthy of food, and THIS body is worthy of acceptance. So here I am. Imperfections and all. I'm waving my middle finger at you anorexia. You will not bring me down today.