Last Wednesday Blake and I headed back up to Denver with the boys to make it to some followup appointments. We took our time driving up there which may or may not have been a good idea seeing as by the time we pulled into the hotel, it took all i had left to make it up to the room and into bed. The boys however had a blast seeing rivers and canyons and even the royal gorge!
We were up bright and early the next morning to make it to my first appointment with the Neuro Ophthalmologist at 8am sharp. I had seen him before my surgery and he had run every test in the book to get a good baseline of how everything was working.
We had received no results other than, “Things aren’t very good.” He explained to us at the time that he wanted to consult with my whole team of doctors and give this the attention to detail it deserved seeing as it was a complicated and confusing case. He didn’t want to scare me with guesses at that point and we all agreed to this plan. Well today was the day we would get some real solid answers, so after they scanned my very soul (again) and poked my eyeballs (…again) and had me wear eye patches and press buttons when the lights came on and “Is this one red, or is this one red?” Dr. P. came in with my nice plump file and started sorting through the data. He showed us all the tests in comparison with the pre-op testing. He was also looking at these new results for the first time, so it was exciting to see and hear the relief and excitement he had at discovering just how much healing has taken place. My eyesight before hand was horrible. Not just the 20-20 type of stuff, but my peripheral vision was non-existent, especially my right eye which was basically blind, and my left was not a lot better. He showed us pictures of my optic nerve and the healing that was obvious even to us. He went on to explain all the different charts and graphs which made absolutely no sense to us, but still brought on joy and encouragement because this Doctor was blown away by how successful this surgery had been. We still are working on letting my brain completely heal and rid my eyes of these remaining “sun-spots” but all that will help in that department is time and rest. I will continue to see Dr. P. until I’m 100% healed. From there we headed back to Swedish Medical Center for my post-op appointment. I had no idea how difficult it would be walking back into that hospital where I spent weeks as a patient. I hardly walked anywhere in this entire building. In fact, I was wheeled everywhere until the second I stood up from the wheelchair to open the door to our car the day I was discharged. I was up and around for PT but that was only a fraction of the day in a gym on the rehab floor. It was very strange and disorienting walking around with my children in normal every-day clothes. It threw me off way more than I was prepared for. Seeing the doors to the ICU, walking past the radiology department, all while carrying a coffee and feeling quite close to normal. While these places and people brought so much healing, they were also places of fear and disorientation for me. I look back on those weeks with confusion still about what happened and why. I know I’m beyond blessed to have the outcome I’ve been given, but the sheer shock and trauma my body went through to get here was no joke. I’m working diligently every day to move forward and to turn those feelings of fear and trembling into strength and motivation.
Our appointment went great! We were shown the post-op MRI and saw the left over fluid/bruise that’s taking it’s time to heal. It’s likely the cause of most of my post-op complications (left sided walking stuff) and they explained that this will take a good amount of time to heal, as the brain doesn’t absorb fluid or blood as quickly as the rest of our body. As for the tumor itself, we are still figuring out what the deal is with it, and why it caused so many issues. It was a benign meningioma as we first thought, but it was bigger than we were initially told. I was experiencing a whole plethora of symptoms that didn’t normally accompany a meningioma. My entire team of Doctors are coming to the conclusion that this tumor came on quicker than normal and raised my intracranial pressure creating an imbalance and forcing pressure on my cerebellum and spinal cord. Removing a good majority of the tumor has relieved this pressure letting my brain function return to normal. Now my body and muscles need to catch up! My left leg has improved incredibly to the point where my neurologist would mark it as no different than my right (other that muscle atrophy) My left arm/hand/shoulder has about a 40lb deficit compared to my right, so we are working on strengthening and reworking those muscles and coordination. As for the tumor itself, I still have one. It’s not as big and bad as before, in fact its very tiny and as far as we know, not causing any problems. They needed to leave that little bit behind because it was in a very dangerous spot they didn’t dare approach. We will discuss out options in May after I have another MRI done to check and see how that little things doing in there. So far, my Neurosurgeon has mentioned some sort of radiation to nip this little bit left, but we have time to decide that, and really will base that decision on the scans.
I do have to say, this beautiful miraculous road to healing is hard. While the PT every day is something physical I can handle and work on, the mental side of things has been a challenge I never could’ve prepared for. It’s a hard thing to explain or even talk about, but here’s to transparency. I’m grateful beyond belief to the team of Doctors who have worked tirelessly to get me to where I am right now. I know I still have a long road ahead of me as far as healing goes. My injury is literally in the control center to my entire body. It’s hard to grasp sometimes when I feel great physically, I am on no pain medications, I have no outward injuries that you can notice (my hair hides the scar very well). So sometimes when I’m standing in my room thinking about how I want to start this little Pre-K school book with Ezra, but I’m too tired mentally to take on a task like that just yet, I feel so guilty and get on to myself to the point where I make things worse. I go into a panic. When will I be able to focus again? When can I start back at school? When will I feel that fire of motivation that I so thrived on before? Have I completely ruined my brain? It’s terrifying beyond belief to feel these things because YES: It is all in my head and YES: It is all V.E.R.Y. real. It’s hard to have to remind myself of that day in and day out. Right now might be the most challenging part because it’s all on me. Back when I was at Swedish, right after I was transferred out of ICU to the Neuro floor, a neurologist I had never met, never before even seen, came in to check on me and decided (after showing me a couple funky pictures on her phone) to diagnose me with something called conversion. She explained it in a way that sort of made sense but that also completely and utterly crushed me. Conversion is where your brain is responding to all this horrible stuff happening by creating these “phantom” symptoms (like not being able to walk right or see anything) and really it’s just up to my brain to decide when to stop. She explained that it could take anywhere from days to months or years for this to let up, and that I had absolutely no power over this. She suggested that we go home and that I talk to a psychiatrist and wait around until by brain turned on again. After dumping that chaotic mess onto my shoulders, she got up and left, never to be seen or heard from again. I sat in my bed and tried to process this for what seemed like days (I think it was only a few hours). I was devastated because up until now, I knew at least I could try my hardest to heal and re-train my muscles. I fought to walk down the halls with that darned walker, and I focused on weaning myself off as many pain meds as I could so I could re-gain my mental capacity (and not sleep 24/7). I was ready and rearing to go, and when I was told, you’re powerless and you can do nothing but sit around and wait, I melted. Thank the Lord for my husband Blake who knew after listening to just 5 minuets of her “explanation” that something did not sound right at all about it. When my surgeon came in to check on me later, I hardly remember it. I will totally admit it, I was done. I didn’t see the point of trying to see how many fingers he was holding up, or squeeze his hands with both of mine, I didn’t want to keep up my “I can do it!” attitude which he had encouraged me so strongly each day to have. I could tell he was a little concerned, and Blake was as well. Blake followed him out of the room and very respectfully asked him what in the heck was conversion and if he agreed with that new neurologist. He did not agree and while he admitted that conversion is a thing, he said he wouldn’t even think of it until months down the line when there was no other explanation for what was happening. Right now I had several different issues playing against me (not even a week out from a craniotomy, bruised brain, fluid on the brain, brain tumor, shock from removal of most of the tumor, the list goes on…) He went on to tell us that I absolutely had power over this and while rest and time are crucial, so was hard work and dedication. He wanted me up and at it as soon as possible. He hated every day that I was in that bed, wasting away (Fun fact: every day you spend in a hospital bed, you lose 1% of your muscle. I was in the hospital for 15 days.) Thanks to my husband’s intuition and my doctor’s unwavering and tough encouragement, I was able to kick my butt back into gear. I’ve had time and time again where the whole “conversion” attitude will creep back in and I feel powerless against this mess, but I remember what I’m capable of and who I’m doing this for. I remember that I started walking again because I strained and pushed my leg to move forward and each step I took made the next one easier. Those steps were my decision, and I had that power over them. It was not easy, but I was not some brain dead zombie waiting for nothing to happen. Now I’m at an entirely new stage in this process. I need to learn how to do it on my own at some point, no incredible Doctors or surgeons, no caring and compassionate nurses to lead the way (at least not for another month). I’ll see the physical therapists periodically until I’m back to normal, but it’s up to me to put the work in every single day. And there is a part of me (the normal Kassidy) that is dying for everyday life, and everyday thinking, but the ouch in my brain is a huge roadblock I’m trying to figure out. I know that there is improvement each day, huge improvements that I am very grateful for. I get overwhelmed sometimes though, seeing how far there is to go. So each day I’m going to stick to my motto that has seen me though this far: Do the next thing.
Tons of love to you all.