As we celebrate the one year anniversary of my surgery and resulting stroke...I am flooded with emotions. This has been one amazing year!! I am so thankful for the course of events that have led to this day.
We had stayed the night before my surgery at a hotel across from St. Joe's Phoenix. We walked across the street in the early morning for my surgery. It was cold and windy. I couldn't believe what I was going there for. A major brain surgery, with more risks than I cared to think about. I was surprisingly calm. In the days, weeks, and months leading up to that moment I had spent much time planning, thinking, researching, and soul searching. The culmination of all my hard work had finally arrived. I was calm because I knew I was not alone...God was with me every step of the way...helping me to do what needed to be done. For those of you that know me, I do not consider myself "religious" in the usual sense, but I am spiritual and I have my own unique belief system that God's power is ours to do good. In my mind, you need to believe that there is a higher power to help you do things that you are not sure you can do alone, and to me Jesus is the prime example of how we can best live our lives.This belief can help to drive miracles. Proof of the power of miracles is in my MRIs. Every doctor that has looked at them before and after surgery, is typically awed by how well I am able to function despite significant damage to my brain. I asked God for strength and tranquility many times along the way to surgery and during my recovery and it was granted. By the time I arrived for surgery, I had done enough research to know that I NEEDED surgery as much as I didn't want it. My thoughts were that I HAD to do this, I've found the best team, let's get it done...and please don't let me die!! I felt I was prepared to deal with just about any other outcome...but death is a hard one to overcome. I had talked to John about some of the nasty possibilities...like if I ended up in coma. I am very sensitive to medication so I told him to be sure to take me off all medication before giving up on me. If there was any chance that I could fight my way back....trust me I'll fight. Just don't give up on me!! Well, much to my delight....I didn't die. I woke up pretty messed up but very happy. My surgery was on Friday and we found out on Sunday that I had a stroke as a result of the surgery. Oh...so that explains the left side facial droop, drooling, slurred speech, and paralyzed left side. It all made sense. While John and everyone else were pretty shocked and deflated, it didn't bother me because I was so happy to have survived and I thought I would get better. In fact, one of the doctors came in to tell me about the stroke and I was completely unfazed....not because I didn't realize my many deficits...but because I thought, "This is fixable...I've heard rehab is hard work...I'm a hard worker..no problem." As I found out later, rehab is hard but a very different type of hard. It was mostly hard on me psychologically. Trying to rebuild yourself as a person is very difficult emotionally. Trying to understand that things I have always counted on were different was very challenging for me. Growing up, my Dad would always say, "Don't count on your looks, for anything...some day that will be gone." So I always counted on my brain...never thinking it too might be gone prematurely! What is it exactly that you CAN count on? Integrity... and being the best you can be no matter what you're doing or going through in life. They say that individuals that suffer right sided brain injuries often lack insight and awareness of their deficits. While I was acutely and sometimes painfully aware of my many deficits, I was so elated to be alive and to have the whole angioma gone. They told me they were able to resect it entirely, which is critical. If any is left, it could grow back and I'm not up for round two! So that was the start of a very long year of reclaiming my life.
I spent the next week in Barrow's Neurological in-patient rehab. In that one week, the transformation began. I was wheeled in...too weak to walk and I walked out one week later! I was christened with all types of great therapy from experts in the field. Speech therapy was the most trying on my emotions and I cried often..realizing I had lost a part of my identity. Who are you..when you're no longer who you thought you were? It was an awakening. I practiced all my exercises in my room when my "therapy" was over for the day and every free moment that I was awake. I wanted to get back to my life ASAP, but I knew these therapists were experts in their fields, and I was a bit scared to leave knowing it would be hard to find such professionals at home. We came home December 21st, 2010. Such a wonderful day, but the day John really got put to work, not that any of this has been easy for him. I felt badly, knowing that I would create more work for him at home. He basically had to take care of Jack and I. While I was doing really well, considering the circumstances, I was discharged requiring 24 supervision. I wasn't safe to do much of anything alone. It then took about a month before I got into a rehab program at home. I was practicing all I could on my own at home, but there is no replacement for professional rehab. I finally started rehab in mid January but it wasn't the right fit for me. The place I ended up had a great reputation, but their patient population typically have far greater deficits than I did. They were "graduating" patients with less functional ability than I presented with. One of the therapists there told me to "lower my expectations" and that was it. I moved to a place closer to our home and it was a great decision. I continued all three therapies for months. I eventually added vision therapy, which was another miracle. My eyes were really dysfunctional and now they are almost 100% recovered. For eye problems I highly recommend finding a neuro-optomitist. I saw 5 eye experts prior to finding Dr. Garbus. While they all agreed, my eyes were messed up...none had solutions and some said my damage was permanent...I'm glad I kept looking for a solution. You can find an expert in your area at www. nora.cc Dr. Garbus and tons of nauseating eye exercises saved my vision!! My new speech therapist was completely amazing too. She worked with me for an extended period of time knowing that I wanted to get all the way better. Another less experienced therapist probably would have discharged me much sooner, but she was committed to helping me meet my personal goals and she had the knowledge and experience to be successful. Working with high functioning individuals is different than most therapists are trained to treat and are accustomed to treating. She was amazing and a big contributor to my recovery. I attended rehab 3 days a week 3 hours a day for the next 7 months. It was a huge commitment and I'm eternally grateful to John for sticking with me through all of this and for helping me meet and exceed all the goals I set for myself. My mom was also a tremendous help, especially with watching Jack while I wasn't able to do so.
As I look back on all we've accomplished it's amazing!! I am very lucky!! I have had an amazing support system cheering me on and I am eternally grateful to everyone that has been a part of our journey. I like to focus on all the positives and goals that I have accomplished, but I am actually going to write a list of the things that still stand in the way of a FULL RECOVERY. After countless hours of physical therapy, speech therapy, occupational therapy, vision therapy, and my home therapy program I have accomplished so much at this point it is hard to identify all that is going right...almost everything! I have a few small remaining deficits that are livable and one big issue FATIGUE that I just can't seem to shake yet. I hope in time all my remaining deficits resolve. I will continue to rejoice and celebrate the wonderful success that has come my way this year. What a difference from last year.
We also received confirmation this last week that YES, in fact, my cavernous angioma is completely gone!! Hurray!!! There was some doubt after having a questionable 3 month follow-up MRI. I opted to skip a 6 month MRI...I didn't want anymore uncertainty or possible negative feedback. This time, at one year, the results were unanimous. Everyone who looked at it agreed...it's gone!!! :) I am so happy to get the final good news. I had looked at the MRI myself prior to getting the report, but my MRI interpretation skills are rough at best. It looked questionable to me. There is still a ton of "white stuff" aka hyperintensity on the scan. I was expecting a black hole. Turns out the white stuff is not blood this time but particles from dead brain cells a common occurrence after brain injury also called Wallerian degeneration. I can handle that because I'm doing fine even with a big piece of my brain gone. AMAZING! When I first looked at my latest MRI, before we got the good news...I had decided....that's it...no more. There will be no more MRI's unless I feel something is terribly wrong. I have done all I could to prevent neurological decline, there will be no more surgeries, no more scans, no more stress, no more worrying about every little thing. I did my best to live and now it's time to get living!!! Then the news came, CLEAR! Tears of joy poured down my face..WE DID IT!! It's finally over. We have reached the hypothetical finish line. I almost can't believe it...I'm free of this dreadful diagnosis!! They always say that learning to live with the constant uncertainty is "your new normal" with cavernous angioma...not anymore for me...mine is gone! I still get the blessing of not taking simple things for granted, I know this life is a privilege...no matter what it brings. If I had not been able to find the courage to have this surgery I would have been left with that bleeding mess in my brain, relentless seizures, feeling horrible all the time and the real possibility of getting progressively worse. Not anymore. I'm getting better and better and the monster is gone from my head.
Yes, this year of recovery has been more challenging than I ever anticipated but it is worth it many times over. Thankful for everyday..more so than ever before! Blessings to all!
We had stayed the night before my surgery at a hotel across from St. Joe's Phoenix. We walked across the street in the early morning for my surgery. It was cold and windy. I couldn't believe what I was going there for. A major brain surgery, with more risks than I cared to think about. I was surprisingly calm. In the days, weeks, and months leading up to that moment I had spent much time planning, thinking, researching, and soul searching. The culmination of all my hard work had finally arrived. I was calm because I knew I was not alone...God was with me every step of the way...helping me to do what needed to be done. For those of you that know me, I do not consider myself "religious" in the usual sense, but I am spiritual and I have my own unique belief system that God's power is ours to do good. In my mind, you need to believe that there is a higher power to help you do things that you are not sure you can do alone, and to me Jesus is the prime example of how we can best live our lives.This belief can help to drive miracles. Proof of the power of miracles is in my MRIs. Every doctor that has looked at them before and after surgery, is typically awed by how well I am able to function despite significant damage to my brain. I asked God for strength and tranquility many times along the way to surgery and during my recovery and it was granted. By the time I arrived for surgery, I had done enough research to know that I NEEDED surgery as much as I didn't want it. My thoughts were that I HAD to do this, I've found the best team, let's get it done...and please don't let me die!! I felt I was prepared to deal with just about any other outcome...but death is a hard one to overcome. I had talked to John about some of the nasty possibilities...like if I ended up in coma. I am very sensitive to medication so I told him to be sure to take me off all medication before giving up on me. If there was any chance that I could fight my way back....trust me I'll fight. Just don't give up on me!! Well, much to my delight....I didn't die. I woke up pretty messed up but very happy. My surgery was on Friday and we found out on Sunday that I had a stroke as a result of the surgery. Oh...so that explains the left side facial droop, drooling, slurred speech, and paralyzed left side. It all made sense. While John and everyone else were pretty shocked and deflated, it didn't bother me because I was so happy to have survived and I thought I would get better. In fact, one of the doctors came in to tell me about the stroke and I was completely unfazed....not because I didn't realize my many deficits...but because I thought, "This is fixable...I've heard rehab is hard work...I'm a hard worker..no problem." As I found out later, rehab is hard but a very different type of hard. It was mostly hard on me psychologically. Trying to rebuild yourself as a person is very difficult emotionally. Trying to understand that things I have always counted on were different was very challenging for me. Growing up, my Dad would always say, "Don't count on your looks, for anything...some day that will be gone." So I always counted on my brain...never thinking it too might be gone prematurely! What is it exactly that you CAN count on? Integrity... and being the best you can be no matter what you're doing or going through in life. They say that individuals that suffer right sided brain injuries often lack insight and awareness of their deficits. While I was acutely and sometimes painfully aware of my many deficits, I was so elated to be alive and to have the whole angioma gone. They told me they were able to resect it entirely, which is critical. If any is left, it could grow back and I'm not up for round two! So that was the start of a very long year of reclaiming my life.
I spent the next week in Barrow's Neurological in-patient rehab. In that one week, the transformation began. I was wheeled in...too weak to walk and I walked out one week later! I was christened with all types of great therapy from experts in the field. Speech therapy was the most trying on my emotions and I cried often..realizing I had lost a part of my identity. Who are you..when you're no longer who you thought you were? It was an awakening. I practiced all my exercises in my room when my "therapy" was over for the day and every free moment that I was awake. I wanted to get back to my life ASAP, but I knew these therapists were experts in their fields, and I was a bit scared to leave knowing it would be hard to find such professionals at home. We came home December 21st, 2010. Such a wonderful day, but the day John really got put to work, not that any of this has been easy for him. I felt badly, knowing that I would create more work for him at home. He basically had to take care of Jack and I. While I was doing really well, considering the circumstances, I was discharged requiring 24 supervision. I wasn't safe to do much of anything alone. It then took about a month before I got into a rehab program at home. I was practicing all I could on my own at home, but there is no replacement for professional rehab. I finally started rehab in mid January but it wasn't the right fit for me. The place I ended up had a great reputation, but their patient population typically have far greater deficits than I did. They were "graduating" patients with less functional ability than I presented with. One of the therapists there told me to "lower my expectations" and that was it. I moved to a place closer to our home and it was a great decision. I continued all three therapies for months. I eventually added vision therapy, which was another miracle. My eyes were really dysfunctional and now they are almost 100% recovered. For eye problems I highly recommend finding a neuro-optomitist. I saw 5 eye experts prior to finding Dr. Garbus. While they all agreed, my eyes were messed up...none had solutions and some said my damage was permanent...I'm glad I kept looking for a solution. You can find an expert in your area at www. nora.cc Dr. Garbus and tons of nauseating eye exercises saved my vision!! My new speech therapist was completely amazing too. She worked with me for an extended period of time knowing that I wanted to get all the way better. Another less experienced therapist probably would have discharged me much sooner, but she was committed to helping me meet my personal goals and she had the knowledge and experience to be successful. Working with high functioning individuals is different than most therapists are trained to treat and are accustomed to treating. She was amazing and a big contributor to my recovery. I attended rehab 3 days a week 3 hours a day for the next 7 months. It was a huge commitment and I'm eternally grateful to John for sticking with me through all of this and for helping me meet and exceed all the goals I set for myself. My mom was also a tremendous help, especially with watching Jack while I wasn't able to do so.
As I look back on all we've accomplished it's amazing!! I am very lucky!! I have had an amazing support system cheering me on and I am eternally grateful to everyone that has been a part of our journey. I like to focus on all the positives and goals that I have accomplished, but I am actually going to write a list of the things that still stand in the way of a FULL RECOVERY. After countless hours of physical therapy, speech therapy, occupational therapy, vision therapy, and my home therapy program I have accomplished so much at this point it is hard to identify all that is going right...almost everything! I have a few small remaining deficits that are livable and one big issue FATIGUE that I just can't seem to shake yet. I hope in time all my remaining deficits resolve. I will continue to rejoice and celebrate the wonderful success that has come my way this year. What a difference from last year.
We also received confirmation this last week that YES, in fact, my cavernous angioma is completely gone!! Hurray!!! There was some doubt after having a questionable 3 month follow-up MRI. I opted to skip a 6 month MRI...I didn't want anymore uncertainty or possible negative feedback. This time, at one year, the results were unanimous. Everyone who looked at it agreed...it's gone!!! :) I am so happy to get the final good news. I had looked at the MRI myself prior to getting the report, but my MRI interpretation skills are rough at best. It looked questionable to me. There is still a ton of "white stuff" aka hyperintensity on the scan. I was expecting a black hole. Turns out the white stuff is not blood this time but particles from dead brain cells a common occurrence after brain injury also called Wallerian degeneration. I can handle that because I'm doing fine even with a big piece of my brain gone. AMAZING! When I first looked at my latest MRI, before we got the good news...I had decided....that's it...no more. There will be no more MRI's unless I feel something is terribly wrong. I have done all I could to prevent neurological decline, there will be no more surgeries, no more scans, no more stress, no more worrying about every little thing. I did my best to live and now it's time to get living!!! Then the news came, CLEAR! Tears of joy poured down my face..WE DID IT!! It's finally over. We have reached the hypothetical finish line. I almost can't believe it...I'm free of this dreadful diagnosis!! They always say that learning to live with the constant uncertainty is "your new normal" with cavernous angioma...not anymore for me...mine is gone! I still get the blessing of not taking simple things for granted, I know this life is a privilege...no matter what it brings. If I had not been able to find the courage to have this surgery I would have been left with that bleeding mess in my brain, relentless seizures, feeling horrible all the time and the real possibility of getting progressively worse. Not anymore. I'm getting better and better and the monster is gone from my head.
Yes, this year of recovery has been more challenging than I ever anticipated but it is worth it many times over. Thankful for everyday..more so than ever before! Blessings to all!
I'm glad you never settled! Your determination has got you far, you set your sights high and you achieved your goals. Isn't it amazing how positive we can be in the darkest of times? You're an inspiration, Elizabeth.
ReplyDeleteA Happy, LIFE anniversary to you, Elizabeth!!!
ReplyDeleteYour positive energy, determination & can-do spirit is inspiring to so many! :)
Patti