Spreading awareness about cavernous angiomas

Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.
I am not a professional writer...I was a math and science lady prior to all my brain problems. Writing has never been my thing. I didn't start writing until I found a "cause" or rather my "cause" found me. I originally wanted to be a doctor but changed my mind many years ago. My degrees and work experience are in psychology and nursing. With that said, I have been writing this blog since just prior to my surgery. I originally started it to keep friends and loved ones informed...and as a much needed source for positive feedback and encouragement during my darkest days...but it has become something very different. It now is my voice for spreading awareness about cavernous angiomas and sometimes stroke recovery. While professional writers probably cringe while reading my blog...fragments/run-ons, grammatical errors, punctuation all wrong, as well as my casual writing style...my writing is anything but professional. Proper writing aside, what I am presenting is my side to the story. My experience with cavernous angiomas, brain surgery, stroke, and stroke recovery. As part of my continuing push to spread awareness, I sent my story to a few publications...hoping they would publish it and help to raise awareness. The first place I sent my story was to Stroke Connection. It's a magazine put out by the American Heart Association. I submitted my story 9 or 10 months ago and they called a few months ago letting me know they selected my story. I am never short on words and my story was extensively edited down to a mere 500 words. The published version varies dramatically from my submitted version, but non the less here it is! Stroke connection article
While my article was edited extensively, I still perceive it as a win for my cause and I hope it is only the start of great things to come. I would love to see the day when physicians actually know something about cavernous angiomas and treatment involves something less invasive than crainiotomy. I will continue my advocacy for this condition and my dear friends afflicted with it.
   

A new year and a new set back

As we rang in the new year...we were hopeful we were leaving all of my health problems in the past. I was hoping 2012 would be filled with continued recovery and good health. Turns out...2012 has brought a minor set back so far. I was not feeling well for several days since Christmas, but had hoped it was related to "over doing it" with entertaining family during the holidays. It became alarmingly clear that there was actually something more going on when I experienced extraordinary back pain that persisted for several days. The first day, I tried to ignore it. The third day that I had the pain, I went to the ER...hoping to resolve any possible problem in 2011. Following the ER visit, I initially improved  only to experience increasing pain over the next two days. When my doctor's office finally opened on Tuesday morning after being away for the long holiday weekend, I was there waiting for her. She examined me and took a complete history of my complaints after which she explained two options. Option A: Go to the hospital, be admitted to figure out what's wrong with me, and get me treated. Or option B: do lab work, abdominal CT scan, and change the antibiotic again (4th switch)...wait for the results and then be admitted if need be. I chose option B...hoping to stay out of the hospital. My lab work and ct scan did not indicate any specific reason for my pain, although while I was in the ER my urine contained bacteria and blood, leading them to the diagnosis of kidney infection. (I had a UTI about a month ago that must have not been entirely treated although most of the original symptoms resolved.)  Normally, one can just be treated with oral antibiotics and the problem resolves. For me, finding an antibiotic that works that also does not lower the seizure threshold was proving to be a challenge. I had been on 4 different antibiotics in the past week that didn't work. My doctor finally selected Levaquin to treat my infection and it is a 10 day course. After consulting with my seizure specialist...he put me back on Keppra. :( So here I am back in a fog, not able to drive while they adjust my Keppra so that my infection can be treated outside of the hospital. There were several other antibiotics that do not increase the possibility of seizures but they are only available in IV formulations. This is just another example of how having a brain problem complicates life.
The good news is that it seems this 5th antibiotic is working. My pain has been greatly reduced and is limited to my left lower back. Additionally, I am still seizure free on day 5 on the 10 day course with the Levaquin. :)
While I do feel this whole episode has been a set back in my recovery...I am hopeful it will resolve in the next few weeks and then I will be back on track. I was advised to stay on Keppra for the length of the Levaquin course and then I will be able to wean off slowly over the next week or so. Looking forward to being "Keppra free" again soon. This stuff makes me really groggy!! And happy New Year!!!

What a difference a year makes: Part 2

Here are some pictures that document the past year. While some of this is not "pretty", this is the reality of where we have been. I can not seem to load the video portions..so I will try to post that another time.

Pre-op 12/10/10

  Me holding a special rock from my Grandma. Asking God to be with me through all of this.

Recovery 12/10/10

 Alive after surgery, barely! Not feeling or looking good. I laid like that for a long time, barely opening my eyes because every time I opened them, I threw up. My neck and jaw were extremely sore. I was in a lot of pain. Glad that's over! :)

12/15/2010

Cruising the hallways of rehab with Jack.

12/15/2010

After I regained some use of my left arm, it remained bent up and "guarded" most of the time. I still have to think about relaxing at times..but I can relax it. :)

12/17/2010

 Tired after a long day of rehab, thrilled to be visiting with my boy who I missed so much! My best smile at the time.

12/18/2010

Working in the rehab gym...after hours.

03/05/2011

My first time "out" alone with Jack. I had to be strong enough and alert enough to keep him safe outside of our home. A very big achievement for me!!

10/31/2011

Our annual trip to the pumpkin patch. The only picture we can get with all of us.

The season of giving

It's that time of year that we often think about giving...not that our giving should be limited to the months at the end and beginning of the year...but it's often a time of reflection that leads to generosity. Prior to my diagnosis I always contributed to my employers annual "giving campaign". Previously, I didn't have a specific cause, so I always made my contribution to the American Cancer Society..thinking my money would go to good use there. Well, as luck would have it, I now have a cause(spreading awareness and trying to find a cure for cavernous angiomas), but I am no longer employed so I my meager donation will remain meager without the generous matching of my former employer. If you or someone you love is afflicted with cavernous angioms, or if you haven't found your cause yet please, please...send your donations to Angioma Alliance @ http://www.angioma.org/pages.aspx?content=109 They are the only organization that I know of that is working towards a cure for this nasty condition. They are very efficient with the donations they receive...almost every penny goes directly towards the cause. AA was one of my greatest resources when I was diagnosed with this rare and often devastating condition. They are working on drug trials now...in hopes they can find a drug that prevents these monsters from bleeding and growing. If the bleeding and growing can be stopped...surgery will be needed less often...and brain surgery is something that will be gladly avoided. Remember, "Without you, there can be no cure!"   

What a difference a year makes!: Part 1

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!

Stand...my turning point

Last year while I was preparing for surgery, at one point I was having a really hard time coping. I felt like it wasn't fair that I had to go through all this. (I know "life's not fair" BUT)  I felt like I had worked so hard to get to this place...exactly where I wanted to be...married to the best man ever, mother to a precious little boy...perfection. How could it be that my dream could end so suddenly? I was just getting started and completely happy and satisfied with my life. At my lowest point, I thought I might not make it...I couldn't handle all the stress or pressure of having surgery and maybe dying...leaving my sweet husband without a wife and my perfect baby without a mother. Then I heard Stand  by Rascal Flatts while I was driving coming back from one of my many doctor appointments...it hit me...I had heard the song many times before but on that occasion the lyrics resonated with me. That's exactly what I needed to do. Get strong. And Stand. I did. I was changed from that moment forward...choosing only to embrace the positive aspects and push everything else away. I was no longer crushed by the seemingly impossible feat ahead.There was NO WAY I was going to let any of this get in the way of my dream life. I wanted to be a great wife and mom more than anything and I get to do it now. Going into surgery I knew all of the risks,just hoped none of them would be my reality. Regardless, I fought my way back so that I could live the life I dreamed of.
There were many songs that inspired me during the past two years...but this one saved the day!

Another thanksgiving :)

Gratitude is a way of life...especially since my diagnosis. I thought I was always grateful...but some how things are different now. I don't take anything for granted. It often hits me when I'm doing something "normal". I think ,"Wow, I actually GET to walk over gravel or sand...AMAZING!" I tear up on a nearly daily basis when I get the opportunity to do something that seems so given to everyone else. I know how lucky I am! Not only do I get to live, I get to live in gratitude. :) This past thanksgiving we got to celebrate with John's side of the family. Rebecca and Tom were a huge help to us while I was in the hospital, and traveling back to Phoenix for a celebration of thanksgiving was surreal. Last time we were driving into the desert was in preparation for my surgery, and now almost a year later we're back to celebrate all of the blessings in our lives. My heart is filled with happiness...and gratitude! Thank you to all the wonderful people that have touched our lives...we appreciate all the love and kindness that has come our way more than I can express in words!!!