Next Level Extreme Fitness

How I am learning to "Do Better. Be Better." after the cavernoma malformation in the pons of my brainstem bled.

Friday, May 15, 2015

Eye Muscle Surgery

On April 7, 2015 I had eye muscle (strabismus) surgery to correct the double vision that still remained from my stroke.  The date was less than ideal because it was Myah's first birthday.   However, we were hoping that all of Myah's birth 7's would bring us good luck.

They did.  My surgery was a success!

Let me back up first, though.  Patrick and I left for Iowa City at 1 pm to get to my pre-op appointment at 2:45.  My doctors rechecked all of my measurements to make sure they were all still stable and talked to us further about the specifics of the surgery.  By specifics, I mean arrival time, when I had to stop eating for the night, etc.  I still to this day have no idea what they actually did to my eyes.  All I do know is that they worked on one muscle on the inner corner of each of my eyes.  I don't want to know because I don't think I would have been able to go through with it if I did.  If I ever need brain surgery someday, I will do the exact same thing.  You can't be scared of what you don't know.  I was frightened enough by the little I already knew.

After the appointment, Patrick and I did some shopping, went to our nephews baseball scrimmage, and went out to eat.  Once we got to the hotel and settled in, I became nervous.  The busyness of the day was gone and I was left to my thoughts.  So, in true fashion, I made myself busy.  I created a 'Do Better. Be Better.' Facebook page and organized some things for Adopt-A-Family.  I finally fell asleep at 11 pm only to wake up at 5 am wide awake.  I decided to write my first Facebook post to the Do Better. Be Better. page to clear my mind and it actually worked.

I was also bombarded by Facebook posts, messages, and snapchats of people wishing me luck and wishing Myah a happy birthday.  The love I felt from those and the busyness that reading them provided made the morning go by very quickly.  Minus the fact that I was absolutely starving!

We arrived at the hospital at 8:30 am.  We only sat in the waiting room for about 3 minutes before we were called back to the outpatient room.  The time before my surgery was spent getting dressed, getting an IV, and meeting with the anesthesiologists and surgeon.  My mom, sister, and brother-in-law were there too. Everything was going fine until we spoke with the first anesthesiologist assistant.  She gave us a rundown of what was going to happen and when she finished, we asked a few questions.  She had NO clue about anything that was in my health history.  It was so bad that Patrick actually stopped her and jokingly asked her if she was drunk.  Needless to say, it was a little unnerving.  The only part of my surgery that we were worried about was being put under general anesthesia and the anesthesiologists didn't know my health history....my rather MAJOR health history at that???  Shortly after she left, the main anesthesiologist came in and calmed our fears.  He was hopeful that since my blood pressure was used to fluctuating from exercise that being put under would be a minor stress to my body.

The anesthesiologist came and got me fifteen minutes after my scheduled surgery time.  My brother-in-law had left for the waiting room a little before that so he had already wished me good luck.  I hugged my sister first, who like my brother, is always strong in these instances, so I was able to hold back my emotions.  Next, was my mom's turn.  Like my sister, she said good luck and I love you.  But also choked out, "everything is going to be okay."  I could tell she was trying to hold back many different emotions which in turn made me emotional.  By the time I hugged Patrick, I was trying really hard to hold back tears.  He gave me a very tight squeeze and nuzzled his head in to my shoulder as I nuzzled my head in to his chest.  He said, I love you and I responded with the same.  I could barely get it out.  In that moment, there were so many things I wanted to say to all of them; if this happens, remember this, tell the girls this...but I couldn't.  I didn't want to believe that anything could happen.  If I were to act like it, then something bad actually could happen.  I didn't want to put it out there in to the universe to be known.  So, instead I said nothing and prayed that they all just knew.  In retrospect, I am still not sure if that was the right decision.  What if something would have happened?

Nice hair net!
I know that this all sounds a big dramatic considering I was having a routine surgery.  I would have never been scared before.  But, I know what kind of evil is living in my brainstem and it could literally burst at anytime.  It could burst in my sleep when I am completely relaxed.  Imagine how much more a risk it is for my CM when it is stressed.   I realize that I go on with my normal day; I work, I exercise, I go 100 miles a minute, but it is different to be medically induced to sleep.  At least when I am awake, I can tell someone if I need help.  I can feel the symptoms happening and give people a warning.  When I am sleeping I can't.  Yes, I was hooked up to a million machines that were monitoring my blood pressure and heart rate.  But still, it is the simple fact that I couldn't speak for myself or feel that was the most frightening.  If something had happened, I would have never known.  I wouldn't have been able to prepare myself for the fight....I would have just woke up to it.   

I actually walked back to the operating room.  The anesthesiologist had me lay down on a table that was barely wider than I was.  He then told me that he would give me some medicine to calm down and I would be out very soon.  The gas mask was placed on my face right after I laid down.  I told them my name and birth date when asked, took three deep breaths, and was out!

Immediately after surgery. 
I woke up to a nurse saying, "Jamie, my name is Greg.  It is time to wake up now."  My first thought, "No!  That was the best sleep I have had in a long time!"  The next thing I knew I was back in the original room, my left eye bandaged, covered in blankets, and surrounded by my family.  Apparently, I made a lot of comments about having a great rest, being GSD in my dreams, and adamantly stating that I wasn't loopy.   My family also told me that I actually got myself off of the bed they rolled me in on and sat down in the chair all on my own.  I do not remember that at all!  I remember all of this; however, I must have sounded much crazier than what I personally thought I did. 

Shortly after that the surgeon and two of his assistants came in.  They were there to check and see if the surgery had been successful or if they would need to adjust my eyes further.  They told me that I would need to open my eyes and let them know if I saw one or two images.  Naturally, I opened my eyes to try.  HOLY SHIT.  The pain.  It literally felt like I had a million shards of glass stuck in both of my eyes.  The second I opened them tears ran down my face.  I remember thinking, "I cannot even open my eyes, nor can I see anything through all the tears when I do.  How am I going to tell them if was successful or not?"  Thankfully, the had numbing drops to put in my eyes.  I LOVE NUMBING DROPS!!  If only I could have taken them home with me!

After the eye test.  Swollen and painful eyes!
Once my eyes were free of pain, they had me focus on the restroom sign out in the hallway.  When they asked me how many images I saw, I joyfully responded, "I see one.  I see one. (insert pause)  I only see one."  I was in complete disbelief.  After nearly 18 months I could finally see one image!  The doctors and my family expressed their delight and then I said, "If I could feel my eyes, I would be crying right now."  To which my mom responded, "We are all crying for you."  Up to that point, I was so consumed with what I could see that I didn't hear the sniffles coming from Patrick, my mom, sister, and brother-in-law.  At that point, Patrick and my mom both stood up and kissed me on my forehead.

After I confirmed that I could see one image, my family had to step out so they could tie off my stitches.  The doctors numbed my eyes a bit further and then surrounded my head.  One doctor had two utensils that resembled crochet hooks and used them to grab what looked like strings.  Keep in mind that my eyes were open watching all of this.  I felt nothing; not even a pull.  But, I watched her manipulate the strings with her utensil and then cut them off.  When I was originally told about this step, I was terrified.  I assumed that it would be painful and gruesome and it was neither.  Actually, it was quite fascinating.

Throughout the surgery, Patrick had been in contact with our family and closet friends.  It was very entertaining to read back through that message chain once I could open my eyes long enough.  I had many heartwarming messages that day, but my favorite was from my friend, Nicki.  She sent Patrick and I this snapchat after he told the group that I was okay and that I had just confirmed that I only saw one image and the surgery was a success.  I really have the best people in my army.  Hands down.


Once the surgeons finished up, I was on my way.  It only took five minutes for the pain to return.  I tried to keep my eyes closed.  I could only keep them open for about 10 seconds before the pain was unbearable.  When we took this picture, I opened them when my sister said 3.  Notice how I still have the marks from where they marked where my eyes were.  Like the surgeon joked, hopefully they didn't really need to use those marks to find my eyes, but it is protocol no matter what surgery they are performing.  Once we got outside, the sunlight was unreal.  My eyes were extremely sensitive.  Even having them closed wasn't completely comfortable.  I could feel the stitches at the top and bottom of my eyelids.  So, if I would move my eyeballs while they were closed, it still felt like shards of glass cutting my eyes.


Car ride!
We stopped at Culver's on the way home.  I was famished.  I ate with my eyes closed and only opened them to see where my drink was.  As soon as I finished, I laid the seat back and tried to sleep off the rest off my anesthesia.

We arrived home around 3 pm.  We walked in the door to all of our girls screaming and running at us, which is our normal welcome home when we have been gone.  Immediately, they asked me what was wrong with my eyes.  I had them open so they could see the redness (my eyeballs looked like they were floating in blood) and my eyes were watering like crazy.  Naturally, they asked why I was crying and was concerned that I was hurt.  I explained to them that my eyes hurt but they were all better and showed them my prism free glasses.  I only stood there and talked to them for 45 seconds with my eyes open, but that was 40 seconds too long!  THE PAIN!!

I quickly rushed to my bedroom to lay down with my eyes closed in the dark. And that is where I stayed the rest of the night.  I couldn't watch TV or read; I literally just laid in my bed with my eyes closed and nestled in with my thoughts.  Later, Linden joined me to go to sleep.  She instantly asked me if I was feeling better.  I told her that my eyes hurt very badly, but I was very happy that they were fixed.  She then said, "Mommy, roll over and I will rub your back and make you feel better."  We always give the girls back rubs when they aren't feeling well so this was incredibly endearing.  She only lasted for about a minute before she fell asleep, but it was an amazing way to end my day.

The next week and a half continued much of the same.  I spent most of my time up until Sunday afternoon laying in bed with my eyes closed.  Patrick did get me some books on tape which was great.  On Thursday the watery eyes finally stopped.  By Friday, I could last a good hour before I felt like I needed to rest my eyes.  Monday-Wednesday was good other than the continued redness, quick fatigue, and light sensitivity.

My check-up went great on Wednesday.  The doctor mentioned that I had more redness in my eyes than most patients at that time, but he was not concerned.  I could see well and he was pleased with the results of my surgery.  I go back at the end of May for hopefully my last visit to the neuro eye clinic EVER!

I started wearing contacts three weeks after my surgery.  AMAZING.  To see clearly, to see one image, and have nothing on my face was wonderful.  To workout without glasses on, well, I can't even put in to words how great that was!  At this point, my eyes are still red, but it looks more like pink eye.  They still fatigue easily so I do not wear my contacts everyday or for as long as I used to pre-stroke.  Simply having the option to wear contacts is a beautiful thing.   

To have my double correction fixed means more than being able to see.  It means that, minus my slight left-sided deficits, I have beat my stroke once again.  It means life is moving forward.  It means my stroke hasn't defined me.

Cheers to many years of being able to literally being able to see things in a brand new light!

Tuesday, May 5, 2015

Paying it Forward: Session 1


The first session of the 'Do Better. Be Better.' events were a HUGE success.  The session started with  a week one returner's only gauntlet and ended with the very first blacklight gauntlet at each location.  We were able to raise $5400!  Better yet, we helped four families in need, rather than our goal of one family that we originally began with.  Thank you to all of you for making these events so incredibly successful.

The stories below briefly highlight those who we all helped.  Gifting the money to these families was an experience I will never forget.  They all wanted to make sure that I extended their deepest appreciation, love, and gratefulness to all of you.  Yes, the monetary donation to them was incredibly helpful.   But, all of them were quick to say that the thoughtfulness and kindness behind it was even more powerful and truly overwhelming.  All of the families were inspired to pay it forward and are hopeful that they will someday help us in our efforts to help others.  


Ross Hansen


In almost 6 years of Ross and Lindsay’s marriage, Ross has endured two spinal fusion surgeries and one crushed vertebrae repair with screws; one surgery during both of Lindsay’s pregnancies.  Since his last fusion in 2012, Ross had been very ill off and on.  He suffered from bronchitis, pneumonia, sinus infections, and war infections all at the same time.  These infections would last three weeks to a month each time with migraine headaches increasing in frequency until he had a tonic-clonic seizure on Aug 27, 2014, which was the day before their daughter's 2nd birthday.  Although it is not considered a "migraine" anymore, his headache is still present today.  Ross now deals with frequent nausea and vomiting. Ross and Lindsay have found an outstanding alternative medicine doctor in Minnesota and are pretty confident he'll be better soon, considering the progress he's made since they started seeing him. Due to his illness, Ross cannot work much and doesn’t receive disability, so it has been a struggle financially.  


Vesna Latic-Sabic


Vesna is a 27 year-old mom of 10 months-old Adhan. On December 25th, 2014, Vesna learned she had Acute Myeloid Leukemia (AML), which is a fast growing form of cancer of the blood and the bone marrow. Vesna will have to have bone marrow transplant.  80% of the time siblings are a match, but unfortunately her siblings were not.  The University Hospitals in Iowa City were able to find a match for Vesna. Vesna has been going through chemo therapy and she has one last session to complete.  At the end of May she will have her bone marrow transplant. Vesna was employed with Bertch Cabinets, but since diagnosed has lost her job due to medical absences. 








 

 

 

 

 

 

 

 

 

 

 

Danielle Morehead


Danielle was diagnosed with stage four inflammatory breast cancer at the age of 31.  Inflammatory breast cancer is a rare and very aggressive form of cancer.  More times than not, a tumor cannot even be felt in a breast exam.  Unfortunately, Danielle’s cancer metastasized to many of her vertebras and liver, leaving her with severe back and abdominal pain.  She was six months pregnant with her third child when she had to make the devastating decision to terminate the pregnancy in order to receive the chemotherapy that she needed.  Her doctors are currently trying to find the right medicine to ease her pain and kill the cancer.  She plans to use half of the funds we gifted her to get a second opinion in Chicago and the other half will be put in a trust fund for her children. 
    



LaShawn Galburth 


LaShawn is the mother of 3 elementary age children and has been in and out of the University of Iowa Hospitals due to complications from a previous surgery.  Due to these unfortunate complications and hospitalizations, she has been unable to work since the end of December.  Previously, LaShawn had held two jobs in order to provide for her kids, even though she receives some government assistance.  LaShawn and her children live in an apartment in Waterloo, but the children attend school in Cedar Falls.  Her children are being cared for by a family friend and grandmother while LaShawn recovers.  LaShawn is using our gift to her to pay for medical expenses that have accrued since she was hospitalized.    ​