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.

What Priscilla Has Taught Me About Myself, Other People, And Life In General

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.

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

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!"