1. The word tumour scares people. Terrifies them. I can comprehend this as a tumour diagnosis leaves so much unknown. What is it? What caused it? Will it get worse? How do we treat it? This fear of the word is part of the reason I didn't want to tell people. I cannot stand the looks of sadness and pity that follow, and I do not want to be treated differently. At the same time, I hate when it's called anything else. To call it a growth or abnormality seems to insinuate that it's something I shouldn't worry about and something that doesn't have the ability to really mess up my day.
2. Roller coaster emotions after a stressful diagnosis are normal. That being said, I really should not go grocery shopping while dealing with this sort of thing because I end up wanting to punch every person I see in the face (although if you have ever shopped at Superstore you might have felt this urge as well).
3. A strong support system has been vital in getting through this. Knowing that everyone is rooting for me makes dealing with this diagnosis much easier to deal with. I don't know what I would do without my family and friends especially because support groups for this sort of thing are not available outside of large cities (Brandon doesn't count, I guess).
4. A large support system is also exhausting. Don't get me wrong, I love that everyone wants to know how I'm doing, but answering the same questions multiple times is tiring. I also sometimes feel like I'm not allowed to have bad days because I don't want to worry anyone or put that hardship on them. This is especially true with work because I want to be able to continue to do my job and not burden my coworkers with my responsibilities, but sometimes I need to check out for awhile.
5. Humour has been the best form of therapy. I think it's important to be able to laugh about scary and negative situations so that they don't overwhelm me. When I was first diagnosed, the best response I got from anyone was a friend saying Priscilla explains why I look so lost on the volleyball court (it's great to have an excuse!). After finding out that the ear-nose-throat doctor will be removing my septum during the surgery, I found I was more stressed out about surgery than I was before. I became so overwhelmed one evening that I was crying and Rob, as comforting and supportive as he has been, said, "Wow, you're really attached to that septum, hey?" That got me to laugh and significantly reduced my stress.
6. As unreasonable as it might be, I find it very ironic, and almost unfair, that I am now a patient with a tumour when I treat patients with tumours in my career.
7. As a patient, I have appreciated health care professionals who are direct and give me all the necessary information, even if it's not pleasant. The one thing that I have hated the most as a patient is when health care professionals talk about me and my case to each other when I am present (like the time the neuro-ophthalmologist spoke to his resident about how unusual my case is for a pituitary adenoma).
8. I have discovered that I am full of contradictions. I have simultaneously wanted to go out and conquer the world to make all my dreams come true while also wanting to do nothing except sit at home and binge watch 20 seasons of my favourite tv shows on Netflix.
9. I have learned to appreciate everything in my life just a little bit more. I try to be more present in my daily interactions, enjoy my time with friends and family, and not get too upset/fight over all the little things that really do not matter at the end of the day.
10. As stressful as some days have been, I have found that my anxiety is a lot better than it used to be. What will be, will be. I cannot control anything except what I put out into the world and I think I have finally made peace with that.
I am sure there are many more things that I could list here and perhaps I will make more lists in the future. My new surgery date/time is quickly approaching and I am finding that I am much more nervous this time around, probably because I know there's no guarantee that it won't be postponed again. I hope that the next update to this blog will be about my recovery. Here goes everything.
Wednesday 30 March 2016
Tuesday 29 March 2016
Some Photos Of My Journey So Far
Say hello to Priscilla
One of many IVs I have had (third one that day)
Rob told me I looked too happy
My super attractive compression socks and booties
Yay to saline and ice chips after fasting for over 15 hours
The look I was giving everyone after being at the hospital for 10 hours
Wednesday 23 March 2016
The Day Priscilla Was Almost a Goner
A little bit of context: when I was first diagnosed, I tried many different things to cope. One of them was naming my tumour. This helped me make it into something I could fight against, overcome, and even joke about. At the time that I was coming up with a name, I was under the impression that my tumour was a prolactinoma. So Priscilla the pituitary prolactinoma had a good ring to it.
Anyways, I was scheduled to have surgery this past Monday, March 21 at 7:30 AM. This meant needing to be at HSC in Winnipeg at 5:45 AM. My parents, Rob and I went into Winnipeg the night before so we wouldn't need to get up at an extremely ridiculous time (5:00 was bad enough). I also needed to fast beginning at midnight the night before.
Monday morning arrived and I found myself mentally and emotionally prepared in a way that I haven't been since finding out I need surgery. This helped me to be relatively calm as we drove to HSC. Upon arrival, I checked in at admitting and was quickly directed to the surgical prep area. Once I got there, I had to change into the overly attractive hospital gowns as well as compression socks up to my thighs. I totally rocked that look.
A nurse came by to start an IV in my forearm. I was actually incredibly impressed by how easily he was able to do this since I have the worst veins EVER. I was also happy that I didn't feel it happening because he froze my arm first. Winning.
After the IV was put in, the nurse told me someone would be there to take me to surgery in five to ten minutes. However, after 30 minutes, I was still there. Around that time, another nurse stopped by to tell us that there was an emergency surgery being done in the OR I was slated in and my surgery would be delayed. She didn't give any info about how long the delay would be or what I should do in the meantime so I had a nap.
A couple hours later, Rob and I realized we hadn't heard anything for quite some time. The next time a nurse walked by we asked her for an update but she didn't have anything definite. We asked her if surgery would still be happening that day and all she did was cross her fingers and mumble something about there being one more surgery before mine. With no answers, I asked if I could at least have a blanket while I was waiting (those gowns aren't the warmest).
At 12:30, my mom went to check at the desk if anybody knew what was going on. I had been at the hospital for seven hours at this point and fasting since 8:00 the night before so I was tired, hungry, and beyond thirsty. We were told at that time that the surgery before me was slated to be done around 1:30 and I would be having surgery after that, so we prepared to wait a little longer.
At 2:00, we still had not received anymore updates and I was beginning to fade pretty quickly. Rob went to ask for another update and ending up talking to yet another nurse. This nurse called down to neurosurgery and came by around 2:30 to say the surgery before mine was taking longer than expected but that my surgeon was still thinking he would get to mine that day. I mentioned that I was not feeling well and thirsty so he hooked me up to saline through my IV and gave me some ice chips (my stomach needs to be empty so that I don't throw up during surgery so that was all he could do).
At 4:00, the same nurse came around to deliver the news I did not want to hear. Apparently the surgery before me was only supposed to take four hours and ended up taking over six so they were going to have to postpone my surgery. I was devastated. Not only had I been sitting there starving all day, I was finally mentally prepared for what was supposed to be taking place. Rob and I had also organized time off work and my parents and younger brother had driven in from out of town to be with me when I got out of surgery. I understand that emergencies happen and there is nothing that could have prevented it, but I was still incredibly disappointed.
The nurse did ask me if I wanted something to eat, offering a sandwich, pudding or juice to which I just said "yes." Rob translated and said I would take all of those things, which I scarfed down in about twenty minutes.
With all that, Priscilla is still with me and I am only scheduled for surgery on March 31 now. That definitely made going back to work today and seeing Tynnille awkward since the last thing she had said to me was, "So long Priscilla, you nasty b**ch!"
Anyways, I was scheduled to have surgery this past Monday, March 21 at 7:30 AM. This meant needing to be at HSC in Winnipeg at 5:45 AM. My parents, Rob and I went into Winnipeg the night before so we wouldn't need to get up at an extremely ridiculous time (5:00 was bad enough). I also needed to fast beginning at midnight the night before.
Monday morning arrived and I found myself mentally and emotionally prepared in a way that I haven't been since finding out I need surgery. This helped me to be relatively calm as we drove to HSC. Upon arrival, I checked in at admitting and was quickly directed to the surgical prep area. Once I got there, I had to change into the overly attractive hospital gowns as well as compression socks up to my thighs. I totally rocked that look.
A nurse came by to start an IV in my forearm. I was actually incredibly impressed by how easily he was able to do this since I have the worst veins EVER. I was also happy that I didn't feel it happening because he froze my arm first. Winning.
After the IV was put in, the nurse told me someone would be there to take me to surgery in five to ten minutes. However, after 30 minutes, I was still there. Around that time, another nurse stopped by to tell us that there was an emergency surgery being done in the OR I was slated in and my surgery would be delayed. She didn't give any info about how long the delay would be or what I should do in the meantime so I had a nap.
A couple hours later, Rob and I realized we hadn't heard anything for quite some time. The next time a nurse walked by we asked her for an update but she didn't have anything definite. We asked her if surgery would still be happening that day and all she did was cross her fingers and mumble something about there being one more surgery before mine. With no answers, I asked if I could at least have a blanket while I was waiting (those gowns aren't the warmest).
At 12:30, my mom went to check at the desk if anybody knew what was going on. I had been at the hospital for seven hours at this point and fasting since 8:00 the night before so I was tired, hungry, and beyond thirsty. We were told at that time that the surgery before me was slated to be done around 1:30 and I would be having surgery after that, so we prepared to wait a little longer.
At 2:00, we still had not received anymore updates and I was beginning to fade pretty quickly. Rob went to ask for another update and ending up talking to yet another nurse. This nurse called down to neurosurgery and came by around 2:30 to say the surgery before mine was taking longer than expected but that my surgeon was still thinking he would get to mine that day. I mentioned that I was not feeling well and thirsty so he hooked me up to saline through my IV and gave me some ice chips (my stomach needs to be empty so that I don't throw up during surgery so that was all he could do).
At 4:00, the same nurse came around to deliver the news I did not want to hear. Apparently the surgery before me was only supposed to take four hours and ended up taking over six so they were going to have to postpone my surgery. I was devastated. Not only had I been sitting there starving all day, I was finally mentally prepared for what was supposed to be taking place. Rob and I had also organized time off work and my parents and younger brother had driven in from out of town to be with me when I got out of surgery. I understand that emergencies happen and there is nothing that could have prevented it, but I was still incredibly disappointed.
The nurse did ask me if I wanted something to eat, offering a sandwich, pudding or juice to which I just said "yes." Rob translated and said I would take all of those things, which I scarfed down in about twenty minutes.
With all that, Priscilla is still with me and I am only scheduled for surgery on March 31 now. That definitely made going back to work today and seeing Tynnille awkward since the last thing she had said to me was, "So long Priscilla, you nasty b**ch!"
Saturday 19 March 2016
What I Have Learned About My Tumour
After getting the diagnosis of a pituitary tumour, I had to wait about a month before seeing a doctor who could actually tell me more about what this meant for me. That wait was excruciating. I am somebody who likes to have all of the information about anything I am going through, so to only know that my prolactin levels were high was not adequate for me. For that reason, I spent a lot of time on Google trying to figure out which of my symptoms were actually due to the tumour. This is actually not a good idea and I would not recommend it. There are way too many scary things on the internet.
Beginning in January, my life became a series of appointments. I saw a neuro-ophthalmologist, a neuro-surgeon, an endocrinologist, an anesthesiologist, an ear-nose-throat doctor, and I also had a CT scan done. Here are the things I have learned about my case through all these appointments:
1. Although the tumour is contacting my optic chiasm and one of my optic nerves, my vision is not actually being affected (yet).
2. My case is abnormal in the fact that the tumour has grown a significant amount in two years. We know this because I had an MRI done in 2013 for unrelated issues which showed no growth in/around the pituitary gland.
3. The fact that my tumour has grown so quickly is one of the only reasons the neuro-surgeon will even consider doing surgery at this point since my vision is not being affected.
4. My prolactin levels are only mildly elevated. This means that the tumour is not actually secreting prolactin (which is what I believed until I saw the endocrinologist) but the tumour is pushing on a certain part of the pituitary gland which is causing the level to increase. For this reason, it cannot be treated with medication and surgery to remove the pressure on the pituitary gland is the only way to bring the prolactin down again.
5. The endocrinologist doesn't think my fertility will be affected in the long run (which is a relief because I didn't know if it would be and I do want to have kids one day).
6. Although the surgeon said the growth on the MRI looks like an adenoma, we can't know for sure what it is until it's taken out and tested.
Beginning in January, my life became a series of appointments. I saw a neuro-ophthalmologist, a neuro-surgeon, an endocrinologist, an anesthesiologist, an ear-nose-throat doctor, and I also had a CT scan done. Here are the things I have learned about my case through all these appointments:
1. Although the tumour is contacting my optic chiasm and one of my optic nerves, my vision is not actually being affected (yet).
2. My case is abnormal in the fact that the tumour has grown a significant amount in two years. We know this because I had an MRI done in 2013 for unrelated issues which showed no growth in/around the pituitary gland.
3. The fact that my tumour has grown so quickly is one of the only reasons the neuro-surgeon will even consider doing surgery at this point since my vision is not being affected.
4. My prolactin levels are only mildly elevated. This means that the tumour is not actually secreting prolactin (which is what I believed until I saw the endocrinologist) but the tumour is pushing on a certain part of the pituitary gland which is causing the level to increase. For this reason, it cannot be treated with medication and surgery to remove the pressure on the pituitary gland is the only way to bring the prolactin down again.
5. The endocrinologist doesn't think my fertility will be affected in the long run (which is a relief because I didn't know if it would be and I do want to have kids one day).
6. Although the surgeon said the growth on the MRI looks like an adenoma, we can't know for sure what it is until it's taken out and tested.
Saturday 12 March 2016
How My Body Told Me Something Is Wrong AKA How Irregular Periods Led to a Tumour Diagnosis
This is hard for me to talk about but I think it is important to be completely honest about this so people can realize that difficult topics to discuss - such as libido and periods - can actually be an indication of underlying issues.
Retrospectively, I think the first indication that something was wrong was a decrease in my libido about a year before diagnosis. It was gradual and subtle at first, so it wasn't really something I noticed. I could also often play it off as being too tired or too busy. It got to the point where I did not even want to be hugged or touched at all. I am so thankful for Rob at least trying to understand even though physical intimacy in our relationship became almost non-existent.
Beginning in June 2015, I started having very strange menstrual issues including: extremely bad cramps (from not usually having any), sore spots under my arms the week before getting my period, late/early periods, and spotting between periods that progressed to the point where it felt like I was having a period almost every two weeks.
Another issue that began in summer of 2015 was an increased sensitivity to bright light. I had noticed several years ago that I could was sometimes bothered by bright lights, but what I was experiencing was quite intensified. If I didn't wear sunglasses outside, I would get terrible pain directly behind my eyes. I can remember one day, while walking my dogs, the pain became so extreme that I had to walk with one eye shut or my eyes squinting almost to the point of both being closed until I got home.
The final issue I noticed was an increased frequency and severity in headaches and migraines. Although I have been prone to headaches for as long as I can remember and have been dealing with occasional migraines since 2009, this was something else. Some headaches were lasting weeks at a time and I began having migraines multiple times a month.
Even with everything going on, the issue that eventually led to my diagnosis of a pituitary tumour was the irregular periods. The thing with this issue that was so concerning is that I have been on birth control for 9 years, on and off, and this has meant that my periods have been regular that entire time. To have periods become so inconsistent while I was still on birth control was odd, so I mentioned it to my family physician when I had my physical exam in October 2015. He decided to do some blood work to check out my hormone levels and we had a discussion about me going off my birth control (the brand I had been taking had been switched to another brand name so he thought that maybe a slight change could be contributing) and I went on my way.
Two weeks later, I returned for a follow up to my physical and while going through my blood work results my physician noted that my prolactin was high. This was odd because, as I found out after doing my own research, high prolactin is usually only naturally present in pregnant women (although birth control pills and stress can moderately raise the level as well). Other causes are usually health issues such as tumours in different parts of the body.
Anyways, my physician said that this was abnormal and we decided to do a repeat blood work in a couple weeks time in order to give my body a chance to react to being off birth control. When that came back abnormal, my physician ordered a brain MRI in order to assess my pituitary gland which is what produces prolactin.
On Friday November 27, 2015 I received a call at work from the MRI department asking if I was able to run over to get my MRI as they had had a cancellation (plus side of working at the cancer center right next to the hospital and having super accommodating coworkers and manager). So I ran over, signed the consent forms required, had an IV inserted to allow a contrast to be injected, and tolerated the extremely loud, extremely long MRI scan. This was difficult since I am claustrophobic. Two hours later I went back to work.
I was only there for an hour when I received a call from my physician's clinic asking if I would be able to go in to see my doctor on Monday November 30 at 8:00 AM. They didn't say what it was about but I knew in that moment that something had been found on the MRI.
After an impossibly excruciating weekend of waiting, Rob and I went to meet with my physician. My doctor has an incredibly strange way of discussing findings of test results. He tends to talk a lot and basically rehashed all the tests I had had and his reasoning behind ordering each one. At some point he said that he had ordered the MRI to determine if there was an issue with my pituitary gland and sure enough there was a tumour found on the scan. He gave me a copy of the MRI report, mentioned that he was referring me to a neuro-surgeon, told me a story about how he had referred a similar situation to the same surgeon and the timeline for surgery for that patient, offered to write me a note to be off work if needed, and sent me on my way to get more blood tests done to measure all the hormones produced and secreted by the pituitary gland.
So that was it. I have a pituitary tumour - more specifically a suspected pituitary macroadenoma (these tumours are considered macroadenoma if they measure more than 1 cm and mine was 8mm x 12mm x 18mm). I had sort of prepared myself for this moment by doing research on all potential causes of high prolactin, but nothing could really make me ready for the realization that my life was about to completely change.
Retrospectively, I think the first indication that something was wrong was a decrease in my libido about a year before diagnosis. It was gradual and subtle at first, so it wasn't really something I noticed. I could also often play it off as being too tired or too busy. It got to the point where I did not even want to be hugged or touched at all. I am so thankful for Rob at least trying to understand even though physical intimacy in our relationship became almost non-existent.
Beginning in June 2015, I started having very strange menstrual issues including: extremely bad cramps (from not usually having any), sore spots under my arms the week before getting my period, late/early periods, and spotting between periods that progressed to the point where it felt like I was having a period almost every two weeks.
Another issue that began in summer of 2015 was an increased sensitivity to bright light. I had noticed several years ago that I could was sometimes bothered by bright lights, but what I was experiencing was quite intensified. If I didn't wear sunglasses outside, I would get terrible pain directly behind my eyes. I can remember one day, while walking my dogs, the pain became so extreme that I had to walk with one eye shut or my eyes squinting almost to the point of both being closed until I got home.
The final issue I noticed was an increased frequency and severity in headaches and migraines. Although I have been prone to headaches for as long as I can remember and have been dealing with occasional migraines since 2009, this was something else. Some headaches were lasting weeks at a time and I began having migraines multiple times a month.
Even with everything going on, the issue that eventually led to my diagnosis of a pituitary tumour was the irregular periods. The thing with this issue that was so concerning is that I have been on birth control for 9 years, on and off, and this has meant that my periods have been regular that entire time. To have periods become so inconsistent while I was still on birth control was odd, so I mentioned it to my family physician when I had my physical exam in October 2015. He decided to do some blood work to check out my hormone levels and we had a discussion about me going off my birth control (the brand I had been taking had been switched to another brand name so he thought that maybe a slight change could be contributing) and I went on my way.
Two weeks later, I returned for a follow up to my physical and while going through my blood work results my physician noted that my prolactin was high. This was odd because, as I found out after doing my own research, high prolactin is usually only naturally present in pregnant women (although birth control pills and stress can moderately raise the level as well). Other causes are usually health issues such as tumours in different parts of the body.
Anyways, my physician said that this was abnormal and we decided to do a repeat blood work in a couple weeks time in order to give my body a chance to react to being off birth control. When that came back abnormal, my physician ordered a brain MRI in order to assess my pituitary gland which is what produces prolactin.
On Friday November 27, 2015 I received a call at work from the MRI department asking if I was able to run over to get my MRI as they had had a cancellation (plus side of working at the cancer center right next to the hospital and having super accommodating coworkers and manager). So I ran over, signed the consent forms required, had an IV inserted to allow a contrast to be injected, and tolerated the extremely loud, extremely long MRI scan. This was difficult since I am claustrophobic. Two hours later I went back to work.
I was only there for an hour when I received a call from my physician's clinic asking if I would be able to go in to see my doctor on Monday November 30 at 8:00 AM. They didn't say what it was about but I knew in that moment that something had been found on the MRI.
After an impossibly excruciating weekend of waiting, Rob and I went to meet with my physician. My doctor has an incredibly strange way of discussing findings of test results. He tends to talk a lot and basically rehashed all the tests I had had and his reasoning behind ordering each one. At some point he said that he had ordered the MRI to determine if there was an issue with my pituitary gland and sure enough there was a tumour found on the scan. He gave me a copy of the MRI report, mentioned that he was referring me to a neuro-surgeon, told me a story about how he had referred a similar situation to the same surgeon and the timeline for surgery for that patient, offered to write me a note to be off work if needed, and sent me on my way to get more blood tests done to measure all the hormones produced and secreted by the pituitary gland.
So that was it. I have a pituitary tumour - more specifically a suspected pituitary macroadenoma (these tumours are considered macroadenoma if they measure more than 1 cm and mine was 8mm x 12mm x 18mm). I had sort of prepared myself for this moment by doing research on all potential causes of high prolactin, but nothing could really make me ready for the realization that my life was about to completely change.
Friday 4 March 2016
The Story of Being Diagnosed With a (Suspected Non-Malignant) Pituitary Tumour
Don't freak out. Most people hear tumour and automatically think cancer - that's definitely what my future husband Rob thought. A tumour is really (just) an abnormal growth and has the potential to be malignant (cancer) or benign (not cancer), and we are pretty sure that mine is benign. This is the story of my journey navigating exactly what it means to have a pituitary/brain tumour and its impact on me.
I have been juggling the idea of writing a blog about my experiences and thoughts on receiving this diagnosis.
Reasons for the blog:
1) It's a way for me to be brutally honest without making myself overly vulnerable
2) It helps me to collect my thoughts and document this whole process
3) I hope that it could be a good resource for someone else going through the same thing or something similar
Reasons against the blog:
1) I have a hard time sharing every personal detail of my life, especially with people I do not know that well
2) People may believe that I'm just doing this for attention
3) Sometimes I think it's too long after my diagnosis to even bring this up
Reasons I have decided to go for it:
1) I have decided that I honestly don't care what people think about my choice to share this experience with everyone
2) People need to start talking about the things going on in our lives that may not be as pleasant as puppies and double rainbows
3) I want to be able to keep people up to date with what's going on
A couple things have occurred recently which helped me get to this point. First, I found myself not wanting people to find out about my diagnosis unless I told them. I do not necessarily care that people find out, but I want it to be on my terms. Being open and honest through this blog is one way to ensure it is on my terms because I really can't stop people from talking to each other. Second, a friend who knew that I was having some health issues which require surgery asked what was going on with me, specifically, only because she wants to know if I am going to be okay. Not talking about what's going on can lead to a lot of unnecessary worry.
This blog is going to go over what led to my diagnosis, how I am dealing with it, and where I go from here. Please note, there may be some uncomfortable information within this blog so if you cannot handle reading about female reproductive organs/functions, libido, or difficult emotions/reactions, this is just not the blog for you.
I have been juggling the idea of writing a blog about my experiences and thoughts on receiving this diagnosis.
Reasons for the blog:
1) It's a way for me to be brutally honest without making myself overly vulnerable
2) It helps me to collect my thoughts and document this whole process
3) I hope that it could be a good resource for someone else going through the same thing or something similar
Reasons against the blog:
1) I have a hard time sharing every personal detail of my life, especially with people I do not know that well
2) People may believe that I'm just doing this for attention
3) Sometimes I think it's too long after my diagnosis to even bring this up
Reasons I have decided to go for it:
1) I have decided that I honestly don't care what people think about my choice to share this experience with everyone
2) People need to start talking about the things going on in our lives that may not be as pleasant as puppies and double rainbows
3) I want to be able to keep people up to date with what's going on
A couple things have occurred recently which helped me get to this point. First, I found myself not wanting people to find out about my diagnosis unless I told them. I do not necessarily care that people find out, but I want it to be on my terms. Being open and honest through this blog is one way to ensure it is on my terms because I really can't stop people from talking to each other. Second, a friend who knew that I was having some health issues which require surgery asked what was going on with me, specifically, only because she wants to know if I am going to be okay. Not talking about what's going on can lead to a lot of unnecessary worry.
This blog is going to go over what led to my diagnosis, how I am dealing with it, and where I go from here. Please note, there may be some uncomfortable information within this blog so if you cannot handle reading about female reproductive organs/functions, libido, or difficult emotions/reactions, this is just not the blog for you.
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