When Life Gives You Lemonade

You happy cry giving people the good news.

Let me back up.

This past month, I have been feeling really good.  I hesitated to say I was feeling back to normal, particularly because part of healing for me has been accepting my "new normal."  Normal is not a constant state of being.  Essentially, normal does not exist.

Also, the last time I thought I was nearing normalcy, I received the news that my prolactin was elevated again so I really did not want to get my hopes up too high (and risk having them come crashing back down).

But I have still been feeling good.  I am finding that I'm able to toelrate more and more in terms of physical activity and social engagements.  I am taking on more projects at home and not finding them too overwhelming after my work days.  Work itself has not been completely depleting me of my energy stores (most days).  My anxiety is low and my panic attacks have become non-esistent.

With all this in mind, I headed into my appointment with my endocrinologist this past Tuesday, April 18.  I was feeling mostly positive with a small shadow in the back of my mind.  It is hard not to worry sometimes.

My endo was very thorough, going through my history and asking about how my other follow-up appointments had been going.  She asked how my periods have been.  To be honest, they have been getting more and more regular since December and I can almost predict when they are going to occur now.  My only concern in this regard has been that they have been extremely heavy and last a lot longer than I'm used to.  My endo explained that these are probably my "usual periods" (boo) now that my prolactin levels are normal, since high prolactin typically causes irregular periods in women.

Did you catch that?  Because I sure did: my prolactin levels are NORMAL.  (I guess in this case normalcy does exist.)

What.  A.  Relief.

So that's what lead to my happy crying - although that could have been due to my friend starting to cry and then trying to awkwardly hug me when I told her the news. 

I haven't really stopped smiling since.

Priscilla truly is dead.

Finding Motivation in the Diagnosis that Keeps Trying to Break Me

Something bad or unexpected happens in your life.  You get angry, sad, anxious, depressed, worried...  But, eventually the shock wears away and you are able to get on with your life.  You have accepted this situation.  You have learned from it.  Everything is good again.  And once you're good, you're good forever.  This is exactly how it’s going to be…right?

Originally, this is what I believed.  I had come to realize that what will be will be.  I was in a good place.  I had accepted that I had a pituitary tumour and that my hormones were out of whack.  I had come to terms with needing to have brain surgery and then needing to recover from surgery.  And after surgery, by last August/September I felt great and was ready to move on with my life, Priscilla free.  No need to continue fretting about it.

But then life threw me another curve ball.  My prolactin levels were elevated, again.  I was ANGRY.  I was distressed.  I worried that it meant that my tumour was growing back and that I will not be able to have children.  I wondered why this was happening to me. 


I ended up putting all of my negative emotions aside and focused on the positive stuff I had going on in my life.  I was getting married, then going on a two week honeymoon through Western Canada.  Rob told me that if we couldn't have kids, we would just adopt more dogs!  I was able to appreciate the day to day beauty of life.  So I was back to acceptance, and things were good again!

Generally I am a very hopeful and positive person, but I am also very much a realist and value knowledge, particularly when it applies to my health.  I know what the possibilities are which is positive in allowing me to know what to keep an eye out for, but also negative if I focus too much on what can go wrong.

I recently found myself in a really dark place again (so confusing, I thought I had accepted my circumstances!).  I could not sleep.  I could barely get myself through my work days, never mind anything else I had scheduled for the evenings.  On weekends where I had no plans, I would spend the majority of my days in bed.  This was largely a reaction to feeling physically unwell again: I have started getting headaches and migraines again (though much less frequently than pre-surgery), experiencing ++nausea daily and sensitivity to light and smells.  The fatigue has not been getting steadily better as it was late last year; if anything, it feels like I’m regressing in that area.  I’m pretty sure I have been grieving the person I was before Priscilla.  I used to be active and healthy.  I used to be “invincible.” 

I have also been tired of having to deal with this illness: the worry that’s always in the back of my mind, the physical effects of it, the follow up appointments that I need to go to every 3-4 months for the REST OF MY LIFE.  I just did not want to do it anymore.

But what other choice do I have?  I can’t just stay in bed forever and hide from the world.

I was recently told “It’s okay to have bad days, but try not to stay there.”  This was the gentle nudge I needed to get myself out of my slump.  I have realized that the stages of managing a chronic health issue are cyclical and endless.  For that reason, I know I’m on a lifetime journey of giving myself permission to feel angry and to feel sad, but then finding ways to pull myself back up again.


Part of my emotional/mental healing during this most recent battle has been finding support systems with people going through similar situations.  I have an amazing network of friends and family who love me and support me, but it’s hard to not have people to talk to who inherently know what I am facing.  There are, unfortunately, no in-person support groups in Brandon right now (maybe something for me to look into developing in the future!) and I do not think I would be up for travelling to Winnipeg right now for their support group meetings once a month.  Instead, I took advantage of online support systems such as looking into what the Brain Tumour Foundation of Canada has to offer, finding blogs and reaching out to their authors, and joining several Facebook support groups.  This was honestly the best thing I could have done.  My only regret is that I didn't look into this earlier.

I am feeling much less alone now.  I no longer feel like what I am going through is abnormal.  These groups are full of people who understand what I am feeling and seem to provide unconditional support and validation of my concerns.   I have also been able to provide my support and experiences to others which, for me, is another huge healing factor.

I am still uncertain about where I stand on several topics relating to “the meaning of life,” but something that I have always kept with me is the belief that everything happens for a reason.  Though I still haven’t completely made sense of why Priscilla happened to me, I am trying to apply my experiences and thoughts to my day to day life.  I find that I now have a better appreciation of all the little things in life: how beautiful and peaceful nature is, how happy my dogs’ unconditional love makes me feel, how delighted I am just seeing the joy of my friends and family, how amazing it makes me feel to do good things for others…

I am also finding that I can easily let go of the insignificant things that used to make me so unhappy: no longer being able to fit my favourite pair of jeans (who needs pants anyways), not having a spotless house (dust/fur bunnies are my new pets), someone being rude to me (maybe they were having a bad day and yelling at me made them feel better)…

A significant application of my experience with Priscilla has definitely been at the workplace.  I find that I am better able to relate to my patients’ experiences and this has helped me be more empathetic.  Being able to provide support and understanding to people going through a terrifying journey makes the work I do much more fulfilling.



Finding some motivation in my life has been essential to keeping me going forward.  I think last year when my life could have easily fallen apart with the recent diagnosis of a tumour and subsequently needing surgery, I was able to keep going because I had so many things to work on.  The big one was recovering from brain surgery (getting my strength back, making it through all the sinus crusting – so gross – and navigating taste and smell changes). 

I was in the process of completing my Bachelor of Science Degree in Radiation Therapy and actually wrote a take home final exam the week after my surgery.  I then started taking a required online stats class less than a month after my surgery because it was only going to be offered online this one time and it was the final class I needed for my degree. 

7 weeks after surgery I returned to work full-time.  This is a decision I somewhat regret because the first few months back were hell for me.  I was not eating or sleeping well due to side effects from the steroid I had been taking and going back to work took a lot out of me. 

Last summer I had my brother’s wedding to prepare for.  I was in the wedding party so I took part in the bachelorette party, making decorations and decorating the hall in the days leading up to the wedding, as well as the rehearsal and the full day of the wedding.  As tiring as all of this was, I wouldn't trade those moments for anything.

In the same month as my brother’s wedding, I also started to play ultimate Frisbee again.  I had been slowly increasing my activity level and thought I was ready.  I had warned my team that I likely would not be able to play the entire game and that the other women would need to play more in order to give me a rest in between points.  During the first game, my legs gave out at one point and I fell to the ground.  I made progress every week and by the end of the season was able to get through a full game with no issues.

After that, I had my own wedding to prepare for.  Thankfully we had opted for a small, simple wedding which did not require too much work and I was able to not stress about it too much.  It was such a beautiful, intimate day that I will remember forever because I married my best friend who has been by my side, never wavering, every day in this journey.


Stolen Moments

Right after our wedding, we took off on our honeymoon through Western Canada.  It was a beautiful trek including so many amazing experiences.  I completed many challenging hikes which was a huge accomplishment.  I also faced a lot of my fears head on during this trip, tackling heights and enclosed spaces by hiking on mountains and bridges as well as exploring underground caves.  It was a much needed getaway.





This year, I have not had much in the way of obligations.  At first I was so excited about all my free time (so much Netflix!), but I quickly realized that not having projects on the go does not work for me.  I need long term goals to move towards, or I quickly lose my inspiration to do anything.

I decided to sign up for the Brain Tumour Walk in Winnipeg this year which will be occurring June 24 (3 days after my birthday!).  I already have a large group of family and friends who will be joining me to walk that day as well as collect donations on my behalf.  This walk is important to me because I am giving back to the Brain Tumour Foundation of Canada which has been a huge resource for me and so many others.  In a way, it’s helping me feel less helpless.  I am also excited for the day of the walk because it will potentially give me a chance to connect with other brain tumour survivors.  (If anyone is interested in donating to the walk through my team, Breanne's Brain Tumour Battlers, you can do this online here: http://btfc.convio.net/site/TR/SpringSprint/General?pg=team&fr_id=1400&team_id=5163)


Other goals I have set for myself include building up my physical activity tolerance.  I know that I need to listen to my body and not overdo it, but I do want to get back at least part of who I used to be.  I am going to look into exercise programs that might benefit me.

I also have some personal projects that I want to start doing to fully redefine who I am.  I used to have many hobbies and interests that I loved which ended up being put aside when I was in school and working full time.  I am excited to get back into my art – including painting, sketching, and music – and working on outdoor projects. 

I think a big advantage to going through everything I have with a tumour and brain surgery is that I finally feel like I can give myself permission to do the things that make me happy, say no to the things that don’t, and fully live my life the way I see fit with no guilt or regrets.  There is a freedom in this view that I never would have gotten without Priscilla.  So I guess I need to thank her for that.



10 Months Post-Surgery: Fatigue

Fatigue – what a misunderstood symptom/side effect.  Everyone knows what it’s like to feel tired.  We all have those days where maybe we did not sleep well the night before or we have had a crazy/hectic day at work and feel like a nap is in order.  And that’s what people often associate with fatigue.  I know I did prior to my tumour diagnosis and subsequent surgery.  I would educate my patients who were receiving radiation therapy about fatigue without fully understanding what it was.

All of that has changed for me now. 

Fatigue, the way I experience it, is more than feeling the need to sleep.  First of all, it comes on suddenly and is not always related to how much I have exerted myself.  Sleeping does not improve it, although the amount of much sleep I get can impact the severity.  My fatigue is experienced through weakness in my legs, feeling like my limbs are extremely heavy, having a hard time concentrating on anything, feeling irritable, having difficulty making decisions, loss of motivation/interest, and – the most ironic one – sleeplessness.  That’s right.  My fatigue has been making it harder for me to sleep. 



Fatigue

This symptom has been affecting many parts of my life, such as personal relationships, my social life, and my general quality of life because I feel like I am not able to do as much as I think I should be capable of.  Part of this is due to fatigue being so hard to explain.  How can someone who has never experienced fatigue understand that I may or may not be interested in hanging out with them depending on how I’m feeling that day?  How can my husband understand that the reason I don’t want him (or anyone) around really has nothing to do with him/how I feel about him?  How do I accept that I am not a failure when I have days I literally cannot get out of bed?  I always feel awful afterwards, but how long will people continue to accept my apologies?  How long do I have to wait to feel “normal” again?  And, really, what the heck is normal anymore?

I have had a hard time accepting that this is still a symptom related to my surgery because that was now ten months ago.  However, the more people I speak to who have had brain surgery, the more I am beginning to realize that the healing process can take a long time, even after all the other side effects have begun to subside.  Even after I look completely fine (although, let’s be honest, people told me I looked great a week after my surgery since I don’t have any scars to show) and people can easily forget that I had brain surgery.

Coping with fatigue has meant learning the different types of fatigue (cognitive/mental or physical), figuring out what my triggers are, and understanding my personal limits.  I have had both cognitive and physical fatigue, although it tends to lean more towards the cognitive.  This means that social interactions/mental work are worse for me than physical activity.  That's not to say that I don't also experience the physical fatigue, though.

I have been able to manage walking to and from work plus walking the dogs and doing other types of activity such as yoga and volleyball fairly well for several months now, so I thought it was time to start adding more.  I, unfortunately, started pushing myself too much with scheduling too many activities in one week or trying to add in more intensity and my body finally told me “NO” last weekend.  We went snow shoeing on Saturday, travelling a distance of approximately 3 km (this is not a long distance for me, whatsoever, since my walks to and from work usually total 3 km).  That evening, my body became incredibly weak and I was so mentally drained that I could not really focus on anything and could barely drag myself up the stairs to bed that night.  At 9 PM.  On a Saturday.



Snowshoeing: my new winter sport!

Knowing my limits has become an integral part of managing my fatigue.  I make a conscious effort to plan out my weeks regularly and set realistic goals for myself.  This includes not scheduling too many activities into one day/evening, prioritizing activities, asking for help with certain things, and being okay with things that are less important maybe not happening  (or happening at another time) if I do not feel up to it. 

Keeping my activity level in the gentle to moderate range is something that is recommended, but I have had a hard time with this.  I was an incredibly active person prior to surgery (played volleyball two nights a week, played ultimate Frisbee one night a week, walked most places, walked my dogs, did weight workouts whenever I could fit them into my schedule, etc.).  Accepting that I am not back at that place yet is difficult.  There are times when I feel great and can handle something a little more intense, but I need to be careful that I am not doing too high intensity too often. 



Winter Walking FTW!



Diet is incredibly important, and I feel like I have been really good about this one.  Eating lots of fruit and vegetables, whole grains and adequate amounts of protein is recommended.  I also eat small amounts often (mostly out of necessity due to my history with gastric issues).  This helps to regulate my blood sugar levels and prevent low points.

Managing other issues – such as vitamin and mineral deficiencies – is important.  I do think that part of my fatigue is related to my low iron levels, so I have been doing everything I can to remember to take my iron supplements when I am supposed to.  I also plan to speak to my physician at my follow up appointment about whether or not I should increase my supplement at times when I would be losing more iron than usual (menstruating is a pain – in more ways than one). 

Keeping the mind active – through puzzles and art – is something that I have yet to try to see if it will help with my cognitive fatigue.  It is something I am definitely interested in trying, especially because I want to get back to my art projects that I put aside many years ago while going to school. 

Managing stress and anxiety is something that I have been working on and, though I feel like I have made a lot of progress, I have been finding myself taking many steps back in this regard.  My panic attacks were always at their worst when I was not sleeping after surgery and I have not been sleeping well for the past couple of months (partially because of my increased anxiety and panic attacks).  It seems like an unending, vicious cycle at times.  I am trying anything and everything to improve my sleep because I think it will make a world of difference.  At this point, I have reduced my caffeine and sugar intake and completely cut out alcohol.  I try not to nap during the day and avoid television/my phone for 1-2 hours before bed.  I have been trying to include relaxing activities for at least an hour before bed (yoga poses, taking baths, reading, etc.).  I use aromatherapy in the form of lavender scents in oils and sprays.  I also have a white noise machine to fall asleep to.

As a last resort, I still take Gravol to help me fall asleep and keep me asleep.  This is something I have been trying to avoid, though, because I am hoping to have children within the next couple of years and if I become pregnant, I should try to avoid Gravol.

I worry that I will never get back to “how I was.”  I asked Rob what we are going to do if this is the best that it gets for me.  His response was that maybe my attitude towards is not right and that I should try to stay positive.  He said it almost sounded like I was giving up.

Although this really upset me in the moment – This whole process has not been easy!  How dare he say that I am giving up when I have been working so hard!  I'm allowed to have bad moments! – I do see where he is coming from.  Thinking that this is how things are going to be for me, forever, honestly makes everything seem pointless.  I am going to keep trying to take everything one day at a time.  Looking back, I can still see all the improvements I have made.  And I am hopeful that in another couple of months, I will be able to look back and see even more progress.  I need to be, because otherwise it means that Priscilla has won.  And that biotch can’t win.

At least I have these comfy dog pillows to rest on.

Sadie Pillow

Hershi Pillow

Getting Good at Hiding

Have you ever had a panic attack during a volleyball game?  I have. 

Have you ever felt your heart skip a beat followed by the sensation that someone just punched you in the chest? How about having this happen three or four times in a row?  I have. 

Have you ever felt like your body is working against you and your ambitions?  I have. 

After discussions with my family physician and counsellor I chose to go off my anxiety medication in November. This resulted in the return of my panic attacks which I have been determined to manage without the use of medication.  I have been making good progress in regards to managing them, but I haven't fully figured out how to prevent them (I'm told it may not even be possible to).  They occur randomly: when I'm out walking, while playing different sports, when I'm sitting at work, when I'm laying in bed... Most people don't know that they have been happening again, and this is positive and negative. Positive in that I can somewhat feel "normal" but negative because there are moments when I could use some support/understanding but don't feel comfortable asking for it. As open as I have been with my experiences on this blog, I still feel a sense of shame. Shame that I can't fully function as I did before. Shame that I haven't "gotten over it" yet. I know most of it is my own assumptions of what people think of me, but I can't help feeling that people think I should stop using my experiences with the tumour and surgery as excuses for why I can't do certain things. 

Another thing that I have been experiencing since my surgery but never mentioned on this blog before is something called PVCs. Pre-ventricular contractions. This is the sensation that my heart has skipped a beat, caused by my heart contracting prematurely then pausing to return to its normal rhythm. The following beat is usually more pronounced. I have other symptoms that occasionally occur with the PVCs, such as a squeezing of the chest, chest pain, dizziness, and the sensation that I'm about to faint/darkening of my vision.  I'm told this is a benign condition, that many people have it but only about 1% of people with it can even detect that it's happening.  I'm told all I need to do is figure out what the triggers are in order to manage them. The triggers can include caffeine, alcohol, stress, anxiety, exercise, dehydration, etc. I've tried monitoring my body's reaction to all these things but nothing seems to be a consistent trigger. The PVCs seem to be worse at certain times in a month which makes me think they may be related to changes in hormone levels.  This is another thing that has been occurring to me that is invisible since I normally don't react to them. In severe cases where it feels like I've been punched in the chest or there are several skipped beats in a row I occasionally gasp and put my hand to my chest, but this is the only indication to the rest of the world that anything is happening. 

The feeling that my body is working against me is a continuing frustration for me. My elevated prolactin levels continue to make my periods irregular so I never know when I'm going to get them or how long they're going to last.  My body also doesn't seem to have figured out how to manage having a period so my iron levels are low, which I am told is contributing to the extreme exhaustion and chest pressure sensations I experience.  My hormone levels have also been wreaking havoc on my weight. Regardless of how I've been eating or how much I exercise, I have slowly been gaining weight since the drastic weight loss I experienced as a result of the gastritis last summer.  I suppose it makes sense since prolactin is usually only elevated during pregnancy in the preparation for breast feeding, but it doesn't mean I have to like it. 

The worry that Priscilla will return is always with me, even when I try to set it aside. My high prolactin levels are indication enough that something isn't right. I hate that this is something I will deal with for the rest of my life. 

A few updates from recent appointments: after a frustrating neuro-ophthalmology appointment (this included a two hour wait - which I am accepting of but was more annoyed by no communication from people working in the clinic about the wait time - staff not doing the proper tests prior to me getting in to see the ophthalmologist and him asking me why they weren't done, the ophthalmologist not knowing anything about me or my history when I went into the room and having the wrong patients' MRI on his computer, and getting to speak to him for a total of five minutes), I found out my peripheral vision is still normal and the inflammation to my optic nerves that was present prior to my surgery was greatly reduced. 

I finally saw my family physician who was able to discuss my MRI report with me in more detail.  It states that my brain is normal in appearance, there is evidence of a transsphenoidal resection (the surgery I had), my residual pituitary gland looks normal, excellent post surgical appearances, and no evidence of residual adenoma. 

I'm going to try to put the good news from these appointments forward to make some positive changes in my life for the new year. I'm looking for new holistic ways of managing my anxiety and panic disorders, such as signing up for yoga classes, trying new forms of exercise such as snow shoeing and dog sledding, considering light therapy, and looking for natural supplements to utilize. I also want to make some adjustments to my nutrition to help me feel as physically healthy as possible. 

Here's to the hardest year of my life coming to an end. 

When Life Gives You Lemons...

You ugly cry in the bathroom of St. Boniface Hospital.

I have a lot to catch everyone up on.

Returning to a normal life after my surgery was difficult. I had lots of ups and downs. More downs than I cared to admit at the time. I made more trips to the ER in a month than I have in my entire life before. I couldn't eat anything more than a super bland, easy to digest diet for over a month, losing almost 20 lbs in that time. I couldn't sleep through the night for many months, and this hasn't fully improved so I'm still occasionally taking Gravol to knock me out (and help deal with the nausea I frequently experience).  I also experienced panic attacks for the first time in my life.

Panic attacks are a strange thing.  They manifest differently in every person who experience them. One thing many people commonly relay, though, is that worrying about having panic attacks often brings on panic attacks. This was true for me. Every new experience I had while returning to my regular life - going grocery shopping by myself, driving when I got the okay from the surgeon, going back to work - made me worry about having a panic attack and then I would have a panic attack.

My symptoms included a racing heart rate, dizziness and lightheadedness, hyperventilating, and the worst part: the belief that I was dying or going crazy. They happened so frequently that I was scared to leave the house and would basically go to work and go home. At work I needed to confide in my coworkers about what was going on so they would understand why I would suddenly start crying/freaking out/need to be on my own for awhile. I couldn't function like that. So I spoke to my physician about medication for anxiety and started going for counselling for my anxiety and panic issues.

My counselling has included dealing with a traumatic event (I had some emotional reactions to the anesthetic and fears of not waking up), getting my sleep cycle back on track, stress management, and learning to give myself permission to take the time to heal and "be normal" again.

I am sharing all of this information because I think it's important to be able to discuss (and feel comfortable bringing up) mental health issues. I am still taking medication and going for counselling and I am not ashamed of this.

July was the beginning of me feeling normal again. I began walking to work every day, started playing ultimate frisbee again (huge props to my team putting up with me learning to use my legs again-I had lost a lot of strength and they would give out without warning), and took up walking the dogs every day again. Exercise became my outlet for anxiety, my way of not fearing an increased heart rate, and my path to feeling like me.

I had an MRI August 8. I wasn't worried going into it because I felt great. I wasn't worried coming out of it because, again, I felt great. I received a report a couple weeks ago stating "new baseline, repeat MRI in one year."  I was on top of the world. I felt great and only needing to repeat the MRI in one year meant everything was good.

In the last month I have had follow-ups with my neuro-ophthalmologist, ENT, and endocrinologist.  Dr. Mansouri assured me my vision was fine and, in his opinion, my MRI looked normal. I see him again in November.

Dr. Meen shoved an endoscope up my nose and told me everything has healed really well. I have some inflammation on the left side, but he can't say if it's related to the surgery or not. He prescribed a steroid nasal spray and said I don't need to see him again unless I have issues and feel the need to make another appointment.

I saw Dr. Ludwig this past Tuesday and went in super optimistic. It has been almost six months since my surgery. I have been feeling great, have been able to eat normally, and have received great news up to this point.

This appointment was where a bomb was dropped on my world (and resulted in me crying in the bathroom).  My prolactin is elevated again. It's not as high as it was before my surgery, but it's higher than the level it went down to after my surgery.   Dr. Ludwig is not certain what this indicates. It could be due to medication or stress. Or it could be an indication that Priscilla is still alive and well (even if it's just in the form of microscopic cells).

Regardless, if my prolactin levels remain elevated, it may eventually stop my ovulation and affect my ability to have children. I need to have my hormone levels closely monitored and my endocrinologist has suggested that I am diligent about getting my MRIs as she is concerned the tumour may return. Having children is potentially going to turn into timing my pregnancies around my MRIs and taking medication to reduce my prolactin levels. I guess time will tell.

The most difficult part of this news has been feeling like I went through the surgery and all the complications afterwards for no reason. It is something I will need to come to terms with, but at the moment I am just going to give myself permission to be upset and take the time to process the news.

Nasal Suctioning Is Seriously Unpleasant

I ended up having four follow-up appointments in the span of a week back in early May (I have been busy adjusting to going back to real life so my update is delayed).  The first one was with the ENT.  I didn't really know what to expect from this appointment.  I assumed they would shove a camera up my nose again to see what was going on in my sinuses.  I was not expecting what really happened.  I was taken into a room where I sat in a chair and suddenly a woman who barely took the time to introduce herself as a resident had me inverted in this chair with a scope and suction tube up my nose to deal with the crusting going on up there.  She did the majority of the work, but there was a section that I guess was being particularly difficult so she went to get Dr. Meen to deal with it.  All the while I was laying there with tears pouring down my face (mostly an involuntary reaction to having all of this happening up my nose).

After Dr. Meen completed his work - which included clipping and cauterizing on top of suctioning - he looked down at me and realized I was not doing so well.  Keep in mind that I hadn't eaten solid food in almost a week at this point due to my esophagitis and gastritis issues.  Apparently I was very white.  After they wrapped my neck and face with cold cloths, he asked if I was okay.  Anybody who knows me would know that this is the worst thing you can ask when I am upset/hurt/traumatized.  All I could do was start sobbing.  At that point, Dr. Meen asked if the work they had done was really that bad and my mom had to explain to him that I had been having GI issues and hadn't eaten much all week.  After I calmed down, we had a discussion about this and he suggested I mention it to my endocrinologist in case it was something related to my hormones and he hoped I felt better soon.

The next week, I saw the neuro-ophthalmogist (Dr. Mansouri), the endocrinologist (Dr. Ludwig), and the neuro-surgeon (Dr. Beiko) in one day.  My appointments with Dr. Mansouri and Dr. Ludwig were pretty uneventful (Summed up as: Have I seen you before?  Why did you decide to go ahead with the surgery? You're having some issues?  Well your vision/hormones are fine so I guess we will see you again in a couple months).  It is a relief that I am doing okay in those regards, however I felt quickly dismissed in both of those appointments.

My appointment with Dr. Beiko was the one where I received the most information.  The pathology came back for the tumour and it is definitely a pituitary adenoma (aka benign) which had a small cluster of prolactinoma cells (which explained my slightly elevated prolactin levels).  Apparently my adenoma was slightly more aggressive than a typical adenoma (damn-it Priscilla!).  Dr. Beiko said that if a normal adenoma had a proliferation rate - or rate of cell division - of 8% then mine would have been 10% so there's a slightly greater chance of it coming back one day.  Due to this, he recommended that if I want to have children, I should probably do that within the next couple of years because high prolactin levels can affect fertility and also because each time surgery/radiation is done (which will be my treatment options in the future), there's a chance my hormones will be affected. 

Dr. Beiko also said that I never  have to see him again unless Priscilla comes back.  So fingers crossed that I'm done with her forever. 

My next scheduled MRI is August 8 so we will have a better idea after that of how successful the surgery was.  This will be the last update that I share on Facebook for awhile, so thank you so much to everyone who has continued to follow my story and wish me well.  I appreciate it all. 

When My "Anxiety" Ends Up Being Gastritis/Esophagitis (And Everyone Keeps Telling Me To Get My Anxiety Under Control)

I have had a month from hell. In my last update I was more than willing to accept that the chest pressure, shortness of breath, and feeling like my airways were closing in were simply symptoms of anxiety and was waiting to be off the cortisone acetate (which is what everyone was attributing the cause of my anxiety to). Well the day where I stopped the steroid came and went and, if anything, my "anxiety" was getting worse and happening more frequently.

I had made an appointment with my family doctor to discuss my anxiety issues as well as some GI issues that had popped up since my surgery (++bloating after eating anything, abdominal pain that would sometimes wake me up at night, constantly feeling like my abdomen was full, and major acid reflux despite being on Ranitidine), but it was going to take 2 weeks to get in to see him. So I waited for that appointment and all of my issues kept getting worse and worse. I started not wanting to eat because the bloating would get so severe I would look like I was 9 months pregnant and this was painful, would only be relieved by walking around yet would make my legs so weak I could barely stand up, and it made breathing very difficult.

Two days before my appointment with my family doctor, I tried to eat a supper of lukewarm, steamed vegetables (I had been feeling awful all day and this seemed to be all I could even consider eating). These soft, barely warm vegetables caused so much pain in my chest and abdomen, I thought I was going to vomit, pass out, or both. I tried drinking an antacid and it barely helped. I ended up staying awake all night with this pain which would not be relieved by anything and early the next morning I asked Rob to take me to the emergency room, again.

After explaining my situation, being assessed, and having some blood tests done to rule out liver and pancreatic issues, the diagnosis was that I had pretty severe gastritis and esophagitis that was likely caused by the steroid I had been taking (probably because I had been told to take it before bed and not with a full meal at supper time like I was supposed to). I was given a prescription for a stronger antacid to allow my stomach and esophagus some time to heal and sent home.

I went to my family physician the next day and explained everything that had been going on. The GI symptoms were worse that day and my shortness of breath was quite evident when I was in to see him.  He said that it sounded like I have gastroparesis (which is where the stomach takes too long to empty) but that this is a rare condition usually caused by nerve damage. He ordered some more bloodwork to rule out H. Pylori bacteria and then filled in a requisition for a barium meal test (which is a series of upper GI x-rays) to see if there are any strictures or blockages in my esophagus and stomach. He is suspecting that I have a hiatal hernia (part of the stomach ends up in the thorax through the hiatus where the esophagus goes through the diaphragm) so he marks the rec as urgent. We discussed how the symptoms of gastritis and esophagitis could easily explain the "anxiety" symptoms that everyone else kept dismissing and then went over the types of food I should try to eat while my stomach and esophagus were healing. Then I went home.

The next morning I was nibbling on some saltine crackers when I started to feel some pressure in my abdomen which quickly turned into a stabbing pain and intense nausea. There was so much pressure I could barely take a breath.  I tried to walk it off but it kept getting worse so I finally called Rob's mom to ask her to take me back to the hospital. At the hospital they hooked me up to an IV to give me anti-nauseants and fluids. My esophagus kept having spasms which was both painful and frightening. It also kept bringing what little stomach contents I had, including acid, into my throat. I had a chest x-Ray done to see if I had a large hernia (sometimes they are visible if they are big enough). After being at the hospital for several hours I started to feel better, but I knew that was just because I hadn't eaten anything for awhile. They couldn't find anything wrong with me so they decided to discharge me with an increase in my antacids, and the advice to figure out what my triggers are for acid reflux. They also told me that I needed to get my anxiety under control (I guess being emotional when I'm in pain is unacceptable). One nurse actually wrote down a website for counselling for anxiety and depression and told me she "highly recommended it" for me. I took it, but was slightly upset. I know I have anxiety but my physical symptoms were not just being caused by that.

The next week was rough. I could only handle fluids so was living off of boost (hind site: anything with dairy is not a good idea for my upset stomach), Gatorade, and chicken broth. Even those few things would often make me nauseous and achy. I lost 7 pounds on top of the 7 I had already lost since the surgery.

I have since been making a pretty good recovery in the past week. I started adding really soft, bland foods to my diet. I don't have any pain anymore and I rarely feel nauseous. I still can't eat very much at one time but I have been eating often and seem to be maintaining my weight now.  I have also been sleeping well for the first time since my surgery, which is unfortunate since I'm sure my body could have used the rest well before now. I was supposed to return to work last week, but with everything going on I knew I had to give myself some time to heal and delayed my start date to next Wednesday.

My "urgent" barium swallow test has been scheduled for May 30 (it took my doctor's office three days to even fax the requisition) so we will see what comes of that in the near future.

Next time on the Priscilla Chronicles: follow up appointments with the ENT, neuro-ophthalmologist, endocrinologist, and neuro-surgery.

The Ups and Downs of Recovery

So it has been almost three weeks since my surgery. The first week basically went how I thought it was going to: I couldn't breathe through my nose for the most part and when I did I could not smell anything. This also altered my sense of taste quite significantly which made eating anything a bit interesting (I couldn't taste garlic at all but salt and sweet flavours sort of made it through).

Following the surgery, I have been taking a steroid called cortisone acetate which mimics the steroid cortisol which our bodies naturally produce.  Often, following a pituitary tumour resection, a person's body is temporarily unable to produce the hormone which would stimulate cortisol production (I was recently told this is because the surgery is similar to peeling a grape so damage/disruption to the pituitary function is possible) so this steroid is necessary.  Knowing this has not made being on this steroid any easier: I have been experiencing side effects of disrupted sleep, upset stomach, and anxiety attacks which I have never experienced so severely before (intense chest tightness and the  sensation that I couldn't breathe). On top of all of this, my emotions were all over the map.  I would go from being over the moon happy to unreasonably angry to devastatingly sad for no reason.  I also found that I only wanted to focus on myself and literally not give a shit about anything or anyone else, but then feeling excruciatingly guilty and torn over this (only focusing on myself is not something I normally do).  Between the surgery, not sleeping for two weeks after surgery,  and my roller coaster emotions, I was exhausted.

Something else that came up after the first week was dizziness. This was occasionally a sense of lightheadedness when standing but I was also getting the sensation that the room was spinning and this would happen randomly regardless of me standing, sitting, or walking around. After speaking to the endocrine nurse and surgical nurse and neither one of them wanting to take responsibility for this, I decided it was time to go to a walk in. The surgical nurse did mention that I should be assessed for dehydration in case my fluid inputs and outputs were disrupted, but I was fairly certain that wasn't an issue.

After 5 hours of waiting, discussing my issues with a physician's assistant, getting bloodwork and an ECG done, I found out that all of my results were normal but I had fluid in my left ear which may contribute to my sense of imbalance. I suppose this could make sense since I had an ear infection a month before surgery and my throat and nose were so sore after surgery that my Eustachian tube could have become inflamed again.

The physician's assistant also went through how a surgery in the area of the pituitary gland can have ripple effects on the natural hormone productions which would explain the severe mood swings. He also discussed cortisone acetate as a steroid that provides a burst of adrenaline which could explain the tightness in my chest I was experiencing and why I wasn't sleeping at night (the instructions I had for taking the steroid were on tablet in the morning and half at bedtime). So I resigned myself to being an emotional, sleep deprived, anxiety ridden mess for awhile longer and took decongestants for the fluid in my ear.

This past Monday I had tests and an appointment with my endocrinologist. All of my hormone levels were tested - both the hormones produced by the pituitary gland and the ones that go on to be stimulated by these hormones - and then my cortisol levels were measured before and after an ACTH stimulation test to see if my body was producing adequate amounts on its own.  I was told at this time by the endocrine nurse that many people need to be on cortisone acetate for the rest of their lives as this seems to be one of the most sensitive aspects of the gland. I was slightly upset that I was finding out about this way past the time I made the decision to go ahead with the surgery but tried to remain hopeful.

At the appointment with the endocrinologist I received a whole lot of good news. First, my cortisol levels and response to the stim test were adequate enough to allow me to slowly taper off of the steroid.  The endocrinologist also mentioned that my second dose was actually supposed to be taken with my supper (I was given the incorrect info when discharged from the hospital) so, as frustrating as not knowing this for two weeks was, that alteration to the schedule should help me sleep at night.

The other good news was that my prolactin had come down by more than 50% and is now in a normal range and my estrogen levels had come up. These two things combined meant that my cycle should renormalize and my fertility should not be affected long term. I didn't think I would ever be so happy about the prospect of having my period again.

So with all that good news it has made my recovery feel like it's headed in the right direction. I am still having issues with anxiety and, in fact, ended up in the ER last night when a panic attack lasted five hours and I thought I was having a heart attack.  I also almost freaked out when I had a nosebleed after using my nasal rinse. The way the endocrinologist put it when I mentioned my anxiety issues, surgery is a serious, traumatic event for a body and anxiety could definitely be an after shock of this situation, especially since it affects my natural cortisol production. I am going to try to ride this out and see if things improve after I am off the steroid completely.  Rob and I now have a plan in place to try to manage my anxiety when the attacks occur and I have anti-anxiety medication I can take if I need to even though I would prefer not to. If this issue persists after the steroid is no longer a factor I will look into getting a counsellor because the physical manifestations of anxiety are no laughing matter and can severely affect my quality of life. I went years managing my anxiety on my own, but I can appreciate that this scenario is drastically different and sometimes asking for help is the best option.

A few highs of my recovery so far:

My dad giving me advice on how to get rid of my moustache if the steroid causes unwanted hair growth.

Seeing my niece and nephews (although this was also stressful due to crazy emotional me).


Spending time with my parents and receiving this beautiful book from my mom.

Training my parents' puppy with varying degrees of success. 

Next time on the Priscilla Chronicles: follow ups with the ENT, neuro-ophthalmologist, endocrinologist, and neuro-surgeon to happen early May. 

Goodbye Pig Nose

I was under the impression that the nasal packing would be taken out the day after surgery (since all the papers I had gotten about the surgery stated this as a fact). However, when the doctors did their rounds Friday morning they said the packing would have to stay in until Sunday possibly. I did not like this news. The packing hurt, made it difficult to eat, and necessitated breathing through my mouth which I did not enjoy.  I did remember the ENT resident telling me that in order to make sure things heal properly they had to make me really uncomfortable for a couple of days so I ended up accepting this.  The staff did provide me with an oxygen mask that they added a mist to do that helped with the mouth breathing.

They did at least end up taking the catheter out on the Friday so I was able to get up and go to the bathroom myself.  The downside was that I had to urinate in what the hospital staff called a "hat" because they still needed to measure my fluid inputs and outputs. Oh well, at least I wasn't measuring someone else's pee.

Saturday morning arrived and the neuro-surgical resident who had taken part in my surgery asked me if I was ready to get the packing out. I did not even hesitate. YES.  Having that packing taken out was simultaneously the best and the worst feeling. It was excruciatingly painful and you do not even want to know what else came out with it (unless you are a disgusting human being in which case I do not want to talk to you). The instant relief of not having a foreign object jammed up as far as it would go in my nose was so satisfying though. Plus I could breathe through my nose for about two seconds before becoming congested.

Another part of my hospital stay that I did not enjoy was the heparin shots. These hurt. A lot. My nurses did not even sugar coat if, they just said that it would be painful. They are also necessary to prevent blood clots in patients after surgery since most people are not very active for the first little while.  I tried to just breathe through them and not make a big deal out of it, it's not the nurses fault it feels like they're injecting acid into my body.  I apparently impressed one of my night nurses by not making any noise because he told me he's had grown men cry when given that shot. What can I say, I'm a tough lady.

The rest of my hospital stay was pretty uneventful. I ended up being moved out of the step down unit into a room on the floor where I was not monitored as closely. I was encouraged to walk around more so I went for a journey to the cafeteria with some visitors that afternoon.

I did get a glimpse of the complications that could have occurred with my surgery while I was in the hospital. My roommate when I was moved to the ward had had the same procedure that I had except she ended up with a cerebral spinal fluid leak after surgery (this is a very real possibility when there's surgery that involves cutting open someone's skill). One way to manage a CSF leak is to insert a spinal drain and relieve the pressure that would cause the CSF to seep from the surgical opening. Unfortunately, this process can sometimes cause bacterial infections which is what happened to my roommate. She had bacterial meningitis and was being treated with intense anti-biotics for that which meant she had been in the hospital for 12 days. It made me feel guilty for recovering so well in contrast.

By Sunday morning, I was cleared to be discharged.  I wasn't in much pain, I wasn't voiding too much urine, I didn't have CSF leaking out of my nose or down the back of my throat, my vision was fine, and I was feeling relatively OK (other than still not being able to breathe through my nose, the discharge from my nose. having the occasional headache, being tired, and feeling like someone had beaten me).

I have spent the past week out of the hospital at my parents' place in Ste. Rose because I'm not supposed to do anything too strenuous (no lifting anything more than 10 pounds and no housework) for two weeks. I feel like I make a lot of progress every day and anyone who doesn't know that I had surgery likely would assume there's nothing wrong with me right now. In fact, everyone keeps commenting on how good I look. This is nice but I almost wish I had an impressive scar to show what I went through eight days ago because it was still quite the ordeal.  I guess I do have this one bruise to show off.

The issues I'm having now: fatigue (I think the steroids I'm taking are affecting my sleep patterns), breathing through my nose is difficult and hurts, occasional headaches.  The healing of my nasal septum is uncomfortable and disgusting. There is a lot of "crusting" occurring that makes it difficult to breathe and also causes some tenderness. I have nasal sinus rinses that I now have to do three times a day and I hate them even though I know how necessary they are.

The next step for me is follow up appointments. I see an endocrinologist in a couple weeks to assess my hormone function as there is a chance that was affected by surgery. In about a month I will see the ENT, neuro-surgeon, and neuro-ophthalmologist and then I will get another MRI in three months. I'll keep the blog updated on those appointments as I go.

The support I have received from Rob (special shout out to the man who has taken all of this in stride and been there for me every step of the way, saying that as long as I am good he is good), my family, friends, coworkers, and even people who I haven't spoken to in years has been overwhelming to say the least. I am so thankful for all of it, especially people taking the time to read about my experiences and cheering me on.

I am so in love with all the amazing and thoughtful gifts I have received along the way. Here are some of them:

Hospital Food, Pig Nose, and Lack of Sleep: The Worst Parts of Recovery

Recovering from surgery is a weird process. Coming out of the anesthesia is probably one of the oddest sensations I have ever experienced and is something I hope to never have to experience again. That being said, recovery hasn't all been bad. Here's a list of the ups, downs, and in betweens.

1.  Apparently when I'm coming out of general anesthetic, I think I am freaking hilarious.  I came up with the title of my last blog post (Ding Dong the Bitch is Dead) during that time. I also made lots of jokes about feeling like I was insanely attractive in that moment. This is the selfie I decided to send a bunch of people to show off just how beautiful I am immediately after surgery:

2.  My nephew, Lucas, is the truly hilarious one in my family. When he saw the above photo, he asked if it was from picking my nose and how would I have done that without Rob seeing it happen? He then said that if Rob would have seen me picking my nose, he would have said, "Aunty Breanne, that's gross" and I would have stopped.

3.  The only pain I really felt right after surgery was a sore throat and nose (not sure if this was explained but the surgery to remove my tumour was up through my nasal cavities/sinuses). I assumed I was on great pain meds but apparently my IV was just hooked up to antibiotics and saline.  If I ever had a headache I was given Tylenol.

4.  Without the crazy gauze covering my nose, I really only looked like I had been beaten up and had a swollen nose. When someone showed me a picture of what I looked like, I said "I look like a pig.  Hah!"  Also, laughing with mega packing up your nose is hard and I don't recommend it.

5. My throat is still sore and my uvula is swollen to a crazy degree (I constantly feel like I have something in my throat). This is apparently normal due to the intubation done during surgery but it's still an awful feeling and I can't wait until my uvula is a normal size again.  With this pain, it made eating in general difficult, especially the same day as surgery. When they brought my supper that evening, I couldn't quite believe what they expected me to eat. Potato wedges, mystery meat, and blueberries did not go over too well. Thank goodness my mom went and bought me some jello.

6. Waking up with three IVs, a catheter, and crazy stockings that get hooked up to a machine that rhythmically expands the stockings to help my circulation is disconcerting. I have come to hate needles so having three IVs (plus one more puncture wound where they tried to get one started) was probably the worst part. 

7.  Not sleeping after surgery is awful. My first night in the hospital, I could not fall asleep. I had one neighbour who screamed all night because he was in so much pain and another one who yelled at the nurse every hour for pain meds (even though they were giving it to him as often as they could). Between that and being woken up the few times I did drift off to do tests, I think I maybe got three hours of sleep that night. Then the doctors and residents came around to do rounds at 7 AM and I was sent for a CT scan at 8:30. It made for an exhausting beginning to my recovery. 

8. My neuro-surgeon came to visit me the first morning after my surgery to see how I was feeling and to reiterate at that point that the surgery was very successful.  He also mentioned that the CT scan I had had that morning showed no residual tumour, which was above and beyond what I was expecting from all of this. I did not think they could get all of it because of all the critical structures (arteries and nerves) in that area. 

I'm going to end this post on that very positive note.  Dr. Beiko did mention that an MRI would be a better imaging modality to see the brain tissues but I will only be getting that done approximately 3 months after surgery. I am still super excited and positive about the results and reassurances from the surgeon, however. 

Next time on the Priscilla Chronicles: the removal of the nasal packing was simultaneously the worst and best part of recovery and heparin shots hurt like a son of a gun.

Ding, Dong, the B**ch is Dead

Well, scheduled surgery number two started out a lot like scheduled surgery number one. I arrived at HSC at 5:45 AM with my family, we checked in with admitting and then were brought up to the surgical prep area. I donned my wonderfully attractive gowns, compression socks, and booties and was basically at the same point I made it to last time. The nurse attempted to find a viable vein for my IV to be put into, but my veins were not cooperating this time around.  The nurse said she would leave it to the anesthesia nurse just so they had something they could work with. Then, much to my surprise since I was really half expecting surgery to be cancelled again, someone came to get me to take me to the pre-op area. In that area I met the anesthesiologist, the anesthesia nurse, one of the surgical residents who would be taking part in my surgery, and then I was left alone for a short while.

Suddenly, another nurse approached and introduced herself as the charge nurse for the OR. She mentioned that the hospital's network was down so they were not able to access my MRI or CT scan so my surgery was going to be delayed until the network issue was resolved. Apparently my surgery was the only one at that time that required diagnostic imaging as all the other patients gradually got rolled in to their respective ORs and I was left alone.

After about half an hour, Dr. Meen, the ENT came out and asked if I was starting to feel like they were cancelling on me again. I mentioned that it was starting to feel very familiar and he reassured me that the network was in the process of being fixed and they would be taking me in shortly.

In the meantime I had the anesthesia nurse searching for Rob to notify him that the surgery was delayed just so they wouldn't all be thinking that I had been taken in at 7:30. She returned to the pre-op area with Rob just after yet another nurse came to get me ready to take into the OR. This nurse jokingly told us that he could close his eyes if I wanted to give Rob a big smooch.

So, an hour behind schedule, I was finally brought into the OR. There were several people in the room but I had started to lose track of who everyone was at this point. They had me shimmy over to the operating table, covered me in some warm blankets, started explaining everything that I would experience prior to falling asleep, and how I would feel when I was in the post op area. Then they put a mask over my face, instructed me to take some deep breaths, and the last thing I remember was a sharp pain as the anesthetic went into my arm and saying "Ouch, that's unpleasant."

The next thing I recall was someone asking me if I was feeling any pain. All I could really feel was an intense pain in my nose (which I found out after was from all the packing they had shoved up there). I was apparently shaking pretty badly so they covered me in warm blankets and gave me some anti-anxiety medication through one of my IVs. They had given me two extra IVs plus a catheter while I was asleep in the OR so I had tubes coming out of everywhere.

The next two hours were spent in the recovery room.  It went by fairly quickly to me despite being asked the same questions over and over and over again...What is your name?  Where are we right now?  What's the date?  Can you squeeze my hands as hard as you can?  Lift your arms, close your eyes and hold them there. Lift your legs one as a time and hold them there. Resist against me pushing on your feet. Just stare at my nose while I shine this flashlight in your eyes...

My neuro-surgeon, Dr. Beiko, came to visit me at this time to see how I was feeling and to tell me that the surgery was very successful. He gave me a chance to ask any questions but I was still in a state where it was all I could do to remember what the damn date was so any questions I had for him were not present in my brain.

Once I was deemed stable enough, I was taken to the step-down unit where they could continue to monitor my blood pressure (I was at 150/80 when my resting BP is usually around 110/70 ish) and keep a close eye on my urine output. This might seem like a strange thing, but the pituitary gland produces something called anti-diuretic hormone and sometimes even just performing surgery close to the pituitary gland can cause a temporary or permanent imbalance in ADH.  Basically someone's body would not be able to determine the best fluid balances and too much urine would be produced in conjunction with an extreme thirst, yet they would still be dehydrated.

This is turning into a much longer post than anticipated, so I will end this here and continue the next part about my road to recovery.  Part One:  Hospital Food and Pig Noses are the Worst (complete with photos!)

Thanks to everyone for following my journey so far.