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.
