Ann Nicocelli Part II: What I have learned...and wish I had known before brain surgery

Today we have part deux of Ann Nicocelli's amazing story and blog. She has twenty points and tips about what she has learned and wished she had known before having brain surgery just over a year ago for a brain aneurysm. She says above all, the most important guidance she has to give is to stay positive and maintain a sense of humor through it all. Plus I've added some shameless Outdoor Mindset plugs along the way in green that tie into her words of wisdom. :)

Here she goes:

1. Your body can only take care of you at the level and quality that you take care of it. The phrase “your body is your temple” gains new meaning. If you take care of yourself, your mind and body will give back to you x100…and you will need it.

2. Everyone taking care of you – from the people in the hospital, your doctors, your family and friends – is human. Although you are the focus, they also have and need their own support networks and friends. It is important to be respectful and appreciative.

3. There is such a thing as too much information at most stages of this process. We live in a world of information frenzy. There are pros and cons to our access as you gather information for a medical procedure. In advance of my surgery, when I went online and looked for similar stories about what to expect, they were hard to find…but there were plenty of scary anecdotes that were not relevant to my situation that were emotionally exhausting to process.
(So instead you should just go to OutdoorMindset.org right from the start and sign up to be a traveler and connect with someone who has experience with a similar diagnosis or neurological experience!)

4. It is ok to protect yourself mentally as you go through the diagnosis, surgery and healing stages. You need your mental strength. It is important to stay strong and keep positive people around you.

5. There is no perfect way to prepare yourself, your family or your friends for your brain surgery. Everyone is different. Do what feels right and is personalized to you. Make sure you have the legal and financial components covered…and from there, it is creative sailing.

6. If your family is involved in the process with you, they may change and your relationship with them may change. This is an intense process and you are not the only one who will be affected. Relationships became much more open, honest and deep. This isnt necessarily a bad thing, but it isn’t always easy at every step. (Have your friends and family sign up to be a part of Outdoor Mindset as well, as a Supporter!)

7. If you have children, they will likely be resilient, but not impervious to what is happening around them. They will take cues from you. Make sure that there is a plan that directly responds to their needs at every stage – before, during, and after surgery. There should to be someone other than just yourself that is sensitive to your children at all stages. The outcome to you surgery is unpredictable, so there should be a plan that can adapt to a variety of foreseeable scenarios. It is important to set this up in advance.

8. Your quality of healthcare and surgical care matters…a lot. Get as creative as you can to get the best surgeons and doctors to help you navigate your journey. Additionally, although your comfort with the lead surgeon is critical, the comprehensive quality of the whole team and all the services of the hospital is very important as well.

9. The way you try to fix your aneurysm the first go around is critical. This is your brain – once a surgeon enters your brain, it will affect your options moving forward – so choosing wisely the first time matters.

10. The surgeons and doctors you talk to will generally give you a solution based on what they know how to do. If they are a specialist in clipping…they will most likely give you a clipping solution. If they coil…they will likely tell you coiling is the best. Remember, medicine is a business. Try to find doctors who can truly give you an assessment of all the options available.

11. Coming out of this you may not be the same or look at life in the same way. This is a daunting statement as it can mean many things. Know that it does not necessarily have to be bad…it can actually be a wonderful thing. Events like this, if internalized, can make you realize what a blessing life is, how to appreciate the small things, and that all those challenges that used to interrupt you from enjoying life, aren’t that significant.

12. If you are single...your social life won't end after brain surgery. I am not sure if it is because you come out more relaxed or if there is some curiosity out there about people who have gone through brain surgery…but there are still plenty of people out there who seem to not really care that you have a scar in your head. It's actually kind of cute. I love my scar, I am proud of it. :-)

13. Most of the healing process is very personal and internal to you. Others are heavily involved, but most of the fight to recover is within yourself.

14. There are many likely scenarios where you can come out of surgery and this process stronger than you went in. Stay strong, remain hopeful, and continue to dream BIG.

15. Lessons Learned about Going Back to Work: Take it slow…if you don’t, your body will make you – there is a reality of how hard you can push yourself, and the limit you had previously is diminished. It will come back, it just takes time.

16. Time has a new horizon. Healing and evolving past brain surgery is not about taking days or weeks, it is about taking months and years. The days matter a lot, but how I handle the months matters too. You may have higher expectations of yourself than others do around you. It is ok to take it slow, don’t be hard on yourself. Give yourself time.

17. No matter what you feel about your life, you will likely feel like you need to go through an entire life assessment…because what happened during surgery was just “that” big. You may end up staying in exactly what you are doing…or you may completely change…it is less about the change than the need to assess and make sure that what you are doing is worthwhile in your own mind.

18. My own personal experience was that I needed to go back to the same job just to prove to myself that I could do it. It became a way to compare and judge if I was any different on any skill. If I would have done something different right away, I would have never truly known or had a way to assess nuanced capabilities.

19. When you are digging deep in racing or training, you will pull from places of strength that were discovered in the brain surgery process. This is a wonderful feeling and makes the process poetic.

20. ...And at one year - I still have the post surgery euphoria. Life is an amazing thing and there is really not much I am afraid of at this point. You learn to deal with phenomenal adversity and see the strength of human character from the front row....or maybe even the stage. (Like Outdoor Mindset always like to say - KEEP LIVING BIG!)

- Ann Nicocelli

Amazing words of wisdom and insight for all of us, especially those going through a challenging neurological journey.

Thanks so much Ann!

jill

A Journey Worth Traveling - Ann Nicocelli

Today we have a guest blog from Ann Nicocelli, an Outdoor Mindset Member in Washington DC who does not believe in limits. Ann was diagnosed with a brain aneurysm and had brain surgery just over a year ago. She is a dedicated athlete, mother, and lover of the outdoors and she has not let her diagnosis define or limit her throughout her journey. She has worked back to amazing strengths after surgery (back at 200% she says!) and continues to compete in triathlons. She is an inspiration to us all.

In Retrospect: One Year After Brain Surgery...

A Journey Worth Traveling

My one year anniversary since brain surgery was two days ago - on September 10, 2011. Trying to wrap my arms around everything that has happened over the last year is a bit surreal. It has been quite a journey. In a way, I feel like it has been a lifetime. I will begin with where I am today, but I must share that the road to getting here has been full of twists, turns, bumps, and near misses.

Nothing was lost and much has been gained through brain surgery...really. I feel extremely fortunate to be here with all of my mental and physical function back at 100% and I actually feel like I am at 200% compared to how I felt prior to surgery. This is due to unending support from family and friends, tremendous medical skill and effectiveness, being physically and mentally fit, a deep passion for the outdoors and a significant amount of luck that the stars aligned to bring it all together.

The mission of Outdoor Mindset resonates deeply with me. My connection and love for the outdoors brought me through my most challenging elements of brain surgery. When I was looking for hope prior to surgery, it was hard to find. Outdoor Mindset brings this all together in one place. It is an organization where you can find information, hope, and friends who have traveled a similar path with common inspiration from the outdoors.

Here is my story...

July 16, 2010: My daughter sat in the corner on a stool in a private room in the emergency area of the hospital. She was occupying herself in a very mature way for a 5 year old, while I went for tests and spoke to the doctors and nurses. After what felt like hours (ok…it was hours), the ER doctor came back in and said that the severe vertigo that I had been experiencing was likely due to stones in my inner ear being out of place.

I didn’t know what this meant. I just wanted to understand what would make the intense nausea and dizziness go away. He then offered that the results of the CT of my head had come back and the blood flow from my neck to my head was normal. This information gave me a split second of relief when he paused, looked me in the eye and added, “the CT also showed that an aneurysm was found in your brain.”

My foggy, pained, nauseous head thought, “What?? an aneurysm? What is that? I am a healthy athlete; it can’t be that big a deal. This is about vertigo and getting rid of it as quickly a possible.”

I heard the doctor. He explained what it all meant in technical terms and then softly said that I didn’t need emergency surgery but that I should set an appointment with a neurosurgeon as soon as possible. He went on to say that it was small…4 millimeters…on the left side…and again he observed that I did not need emergency surgery. I think this last reflection was supposed to provide relief.

I look back on that day and the weeks that followed and a flood of thoughts, emotions and memories come to mind. One thought that is very clear is that I know that being an athlete and my connection to the outdoors has made me stronger, kept me centered, and continues to play a pivotal role in successfully taking me through tremendous adversity. It has truly saved my life.

Surgery:

The more I learned about aneurysms, the more I realized how serious and life threatening this condition was. In preparing for surgery you need to plan for results as varied as death, permanent brain damage, or what is hoped, coming out of surgery stronger than when you entered.

After researching the best neurosurgical facilities, I ended up going with Johns Hopkins Hospital in Baltimore. Ironically my lead surgeon, Dr. Alexander Coon, was also a triathlete. His strength as a surgeon combined with his training as a triathlete and connection to the outdoors became important to my success. Dr. Coon dealt with the severity of my condition while also understanding the approach that an athlete might take going into surgery and coming through it.

I had signed up for the Luray and Nations triathlons prior to surgery. They were supposed to be my first races. I had been a cyclist but decided to jump into tri training to see how it felt. I was ready to go but I ended up storing all my gear and canceling my participation in both tri's. In order to avoid the aneurysm rupturing, I couldn’t do anything that would increase blood pressure in my head prior to surgery. Even though I canceled (or in my mind postponed) the races, I kept training at a scaled down level up until the day before surgery. I swam, biked or ran regularly. Because my surgeon was also an athlete, I was able to manage this under his watchful eye. The training was essential. It kept me balanced, focused, and strong.

I approached surgery almost as if it were race day. I knew it would be hard, that there was an element of unknown, and that I had to be stronger than I ever had been in my life to get through it in a positive way. The surgery ended up being more challenging than expected. I almost lost the ability to speak, understand language, and control the right side of my body. This path was fortunately averted. Instead, I came out of surgery with all of the brain function that I went in with, along with euphoria and an acute awareness that comes from a near death experience. It turns out that the original vertigo, which put me into the hospital, was unrelated to the aneurysm. Additionally, the wall of the aneurysm was so thin that it would have likely ruptured very soon without surgical intervention. I am blessed that the aneurysm was found and forever thankful to my surgical team for bringing me through it so successfully.

Building Back Better:

The memories after surgery of relearning to walk up stairs with a physical therapist are very recent. I made the decision to focus on endurance training because it not only made me happy, I felt like it was the best way to put the fatigue and post surgical healing behind me. It is important to know that after surgery, your brain can heal. Surgery is a traumatic process. There is an evolution that you and your brain will go through of reconnecting. It is actually a beautiful thing to experience. The healing power of the brain is inexplicable in words.

Although I worked out right up to the day before surgery, I suffered a significant loss of strength and endurance through this process. This is typical. My upper body strength disappeared. Under doctor’s orders, I was not allowed to lift anything heavier than a milk carton for 3 months. I went from being able to comfortably perform full push-ups before surgery to not even being able to do one push-up on my knees after surgery. In addition, after the surgery my ability was depleted to the point of not being able to swim 10 meters in a pool or run half a block without being winded. (This is rather traumatic to a self described triathlete!)

I have had a lot of "first's" since surgery...the first time I walked again, the first time I ran, the first time I put a bike helmet back on my head (ouch!), my first triathlon, and so much more. In retrospect, I have learned a lot and healed in a way that has been better than I could have imagined...admittedly fighting every day to build back stronger. I have kept a journal which tracks my daily developments. It also tracks the fun, comical stories like when I went into the bike store a week after I arrived home from the hospital - yes, the true sign of a diehard gear geek! I still had 28 staples in my head and thought it might be the only place I could go and not be stared at...and maybe even be cool if they thought the staples were from a bike jump. I also decided at that point that I could have had the best costume and should have scheduled surgery closer to Halloween. I digress...

Severe fatigue post surgery is common. For me multisport training was a way to look straight in the face of it all and say “that is not going to be me.” Twelve days after the operation, I went for my first run and have been training ever since. I ran a 10k thirteen weeks after surgery in just less than an hour. Completing the race was a triumph. I used this run to qualify for the National Half Marathon in Washington, DC. My first triathlon was Columbia International Tri (1.5k Swim – 41k Bike – 10k Run) on May 22. I raced this with my surgeons Drs. Coon and Geoffrey Colby, also known as A1 and G6 when they are ripping up the roads. I also raced the Luray International Tri, the same distance, on August 13. This was a huge victory as this was a race I had cancelled a year ago to prep for surgery. Yesterday morning (September 11) I raced the Nations Tri in Washington, DC. The swim was cancelled due to flooding, but it was still a great bike and run! It felt awesome to join the two races that I had cancelled last year. In a way it became closure on a year of building back. I can now think big in a new way and define my race schedule based on what will be fun and where I want to take multisport training moving forward.

Healing is an arduous process. There are challenging days and easier ones. You realize there are times in your life when you need to ask a lot of your body. It is so clear to me now that your body can only respond at the level that you take care of it. I am now having fun indulging myself, pushing the athlete in me forward, and seeing what my body and mind can do. I feel stronger, more focused and self realized than when I went into surgery and it is invigorating. Training for me used to be just a way to stay healthy. It has now become an integral part of my life.

CycleLife invited me to join their tri team. The team environment provides tremendous support and our team is a fabulous group of athletes. I spend more time now focused on my nutrition and recovery in between workouts. It has made all the difference in my overall quality of life. I am looking forward to adding cycling and running races to the calendar to supplement the tri's. This will all be coordinated with Steve Dolge, my ever supportive coach.

Life After Brain Surgery:

It would be cliche to say that my life has gone back to normal. There really is no such thing. I am back to being a dedicated mom, to working in the international corporate world, to enjoying time with family and friends, and to living an active, athletic lifestyle. I have been medication free since a week after surgery and I enjoy a life with a sweetness, beauty and calm that comes from facing your own mortality in such an intimate way. There are daily challenges that life brings that now seem easier to put into perspective.

I am proud of being a brain aneurysm survivor, thankful for my wonderful medical team, family and friends, and excited for the future that has been given to me. That precious box that holds the meaning of life has been opened, and I will treasure it every moment.

My connection to the outdoors and endurance training has made me heal faster, stronger, and in a more well rounded way than I could have ever imagined. If you have brain surgery on the horizon, from my heart, I wish you all the very best. A friend who is a cancer survivor told me that this process would make me a warrior. It will do the same for you. You are stronger than you realize, make sure you smile and even laugh a little - or even a lot, and know that many others are with you.

- Ann Nicocelli

WOW - talk about an amazing story!

Stay tuned because later this week we'll be posting 20 things Ann has learned from surgery, and what she wishes she had know before surgery.

Happy Monday!

Jill