Listen

"To have God speak to the heart is a majestic experience, an experience that people may miss if they monopolized the conversation and never pause to hear God's response." ----Charles Stanely

I know with 100% certainty that God is always with me-he is never silent, even when I fall short and make mistakes, He still loves me and hears my prayers. I also know that it is when I am forced to be still that I am able to hear Him very clearly. I am so grateful that He allows me grace and forgives me even when I have let Him fall into the corners of my life instead of being the center of it, even when I have chosen not to listen, He still speaks. For me, it seems that sometimes it takes an event, a person or even a circumstance to open my eyes and focus again and to open my heart so I can hear him- to LISTEN once again.
I have just emerged from some pretty dark days. Days I did not want to face- difficult both physically and emotionally and days that not only affected me but my entire family as well.  I have experienced God's grace and healing so profoundly that I feel that THIS story is the most important part of my story so far. A story worth sharing.
I have talked so much over the last few months about numbers and medical terminology about remissions, failures, procedures and surgeries but what I have not talked about was that there was a time during this whole process when I had to stop listening to all of the medical advice and to what everyone thought I should be doing or how I should be responding and turn everything over to God-knowing that God could do for me what no doctor could and also to realize that even though my medical outcome is not yet what I expected or wanted, the outcome that matters is just how I want it to be. I am closer to God and I have the knowledge that God is always with me if I just open my heart.
I have seen so many times over these last three months how God shows himself in my life.
So today, instead of talking about my numbers and using big words that no one really understands the meanings of, or medical outcomes that do not directly effect you, I want to tell you a better story and one that you to can understand and also be a direct part of. One of grace, humility, faith and my belief that NOTHING happens by chance. NOTHING is accidental or incidental. EVERYTHING is planned by God and God has the perfect plan. The perfect story for you. I am just one person, one story.
When you are dealing with a difficult situation in your life, which for me has been medical, the experiences from that situation stay with you and become part of your story. It is during those difficult times in your life that God brings you closer to Him- that He opens your heart so you can hear Him. I believe that God opened my heart so He could lead me in the right direction- to Him. God led me and reached out to me in so many different ways over the last three months and not a  single one of them was accidental or incidental. Some of them shouted out to me while others were just whispers or gentle nudges. I do believe every single one of them happened for a reason.
God placed so many people into my life, people who I already have relationships with, who showed  me how we should treat each other and what it means to serve others.. I believe God sends help in hearts that give without thinking that help without asking. During the last three months, I have experienced those people who God placed directly in my path who, big or small, gave to me with no expectations. Coffees, cards, flowers, phone calls, food, caring for my children, my house cleaned, my carpets cleaned, encouraging messages, thoughtful notes. I know every single good deed and intention. Every single good word was a direct result of God's love for me.
God also puts people in our lives whom we have never met. Who do not know our hearts or our sufferings but still choose to go out of their way to be a part of your story. What these people do is unconditional and selfless and again, a direct result of God's love for me. God placed Kat, my sweet nurse who cared for me during my worst times after surgery. Kat came when I buzzed (A lot!), listened while I complained, wiped away tears, assured me with words. Always with a smile, always with a kind heart. I know God was guiding Kat. He hand picked her just for me. There were many nurses throughout my stay, none with Kat's heart, no other with her compassion.  Kat was the only nurse who worked two full shifts during my stay, the nurse who was with me the most, the answer to my prayer to ease my anxiety.
Of course, God was nearby while a great team of doctors worked on me both pre op and post op but God also knew that even in the best medical hands, that I would be scared and in pain that first night so he sent Dr. Baboo a neurosurgeon who visited me on a number of occasions, far too many to be considered typical- who listened, who reassured me through a very difficult night and one who reminded ME that she had been with me during this same time in 2008. God's plan- I am sure.
God also sent a Chaplin to my room at the exact moment when I needed her the most- while Kevin, the boys and our friend Jim were visiting. when the helicopter was landing outside and the kids were yelling, when Kevin was dealing with the emotions of knowing his dad was in his final days, when they were drawing blood and changing IV's, when the whole room was tense and I wanted everyone to leave and I told them so- but she stayed and we prayed together. Not only did she provide the calm  I needed at the exact moment I needed it,  she also prayed that God would reassure me he was by my side.
 God did just that one day later when He sent three teenage boys into the lobby of the hospital and who, as they approached my wheelchair, were facing some tense looks from others around us. When they looked at me and asked if they could pray for me, I, of course knew, that these teenage boys were a direct answer to prayers of reassurance. As the 3 strangers placed their hands on my shoulders and prayed over me, as my 11 year old watched and got to experience God's love flowing through me, I had an absolute peace and knowledge that God loves me.  3 complete strangers, 3 teenage boys at 6 PM on a Saturday night in the lobby of a hospital it was  not accidental or incidental but planned.

God also sends help and shows us his presence by placing us exactly where we are meant to be. I felt this for the first time in 2007 when I was standing in front of the statue of the Infant Jesus of Prague in a Monastery in the middle of Sao Paolo, Brazil. When I prayed for healing and was put into a surgical remission one month later. Now, the Infant Jesus of Prague intervened for me once again as a prayed a novena to him again asking for relief, asking for my doctors to listen and for my life to once again be one I can feel good about living. This is why I know, that even though the doctors are saying I m not cured, that I might not even go into remission, I know I still have hope for it to happen because I have God on my side and because I know there is a whole lot more to my story.

So- I am so glad you could all be a part of this time in my life. Today I must keep going forward, to enjoy my perfectly imperfect life,  thankful for all of my blessings and my renewed faith. Through all of this I have learned healing is a gift, it is not a right. Healing can only happen when you open your heart. I am certain that God interceded with mercy and grace. I am also certain that God has a perfect plan for my life, something I have not yet figured out but one I trust is perfect.
If you open your heart, you too will be able to see God in your life. You will be able to recognize and appreciate the people who you cross paths with. You will be able to see that although your life may not seem perfect now, you are a part of a perfect plan- God's plan.

 

Winning Isn't Everything

I lied.  I said my next post would only happen when I could announce I was victorious- that I had won my race.  I think winning is overrated. Winning isn't everything.

In the last two weeks I have learned that victory doesn't always mean winning. Victory is not defined by whether you cross a finish line.  Victory is achieved by simply moving forward the best way you can. Sometimes it is the lessons learned along the path, the small victories that change you and make you stronger. I am still winning my race, it might be taking longer than expected but I am still winning. Today I feel like I can celebrate and share some of my small victories.
I can sneeze and blow my nose again. If you think this is not a big deal try NOT doing it for 2 weeks and get back to me.
I can drive.
I can be in the same room with food and not have to take anti nausea medicine.
I can sleep on my side and not feel like my brains have slipped into my throat.

Medically speaking, we know this surgery did not CURE me-good old zero never came BUT we found out today, my numbers are dropping and dropping is GOOD-zero is overrated !
My ACTH level is non existent-not there-gone. half of my pituitary gone, tumor gone, ACTH gone.
Gone is GOOD.
Before surgery I tried to prepare myself. I thought I could remain positive but what I found was that I was ill equipped to deal with it. Today I feel like I am having more good days and less bad and GOOD is GOOD!

The last 2 weeks have been the hardest of my life so far- At one point during the last two weeks, I even spoke the words, "I do not want to live anymore." and I wasn't being dramatic-I was being serious. I have thrown myself some awesome pity parties in the last 2 weeks, to bad no one could come, they were  Oscar worthy performances.  Speaking of Oscars, Kevin deserves the Oscar for best supporting actor in a horror film. He has been a rock- caring for our children, our home, our finances all while helping his sick wife AND grieving the loss of his father. He also somehow managed to cook a 16 pound turkey with all of the fixings AND put the Christmas decorations up- THE OSCAR GOES TO KEVIN!!!!! My rock, and the love of my life!

So today I would like to announce my race is moving on, going forward. Cure or no cure. Late remission or not. I must move forward knowing I have God's strength on my side. Knowing that having Him on my team is what matters anyway. No more talk in medical terminology, no talk of failures, remissions or numbers. I am choosing today to focus on the story that really matters, the story of the race we all want to be a part of. The story of grace, humility and faith.
The story I will tell soon...

Ben's Party Day

We celebrated Ben's 11th birthday with his friends Friday night.

 A perfect group of kids!

We feel so blessed Ben has such a great group of friends.

Just Dance 4- I had a great time watching them dance.  Wondering where Ben is? He was on the floor break dancing

Pappy gave Ben this Air Moon Jack. It is the coolest pogo stick around. Pappy is our neighbor and has been a great friend to Ben. We love it when he just shows up when we need him the most!!! Pappy and Ben can just sit and talk for hours. We know they are friends for life!

Jamie gave Ben a Iron Man Lego and this book- the third in the continuation of the  Percy Jackson series. Jamie is a great friend to Ben, someone he can count on. They share a lot of interests and Jamie doesn't mind if Ben talks about them- A LOT! Jamie is patient and kind.

 Riley gave Ben a Lego Advent calendar and a gift card to Barnes and Noble. Riley is  such a wonderful girl. She was here with 5 boys and it did not bother her in the least. Riley is such a blessing to Ben because she is patient and understanding. Riley is very quiet but she is also very strong. She has a solid value and belief system, and does not let anyone else influence her decisions.

Rylan gave Ben a whole bag of Notre Dame Football things including a football, a bag, a red ND hat, a ND jersey, and ND football gloves-really cool, one of a kind gloves.  A year ago I could not have imagined this being a present Ben would receive but it is because of Rylan that Ben has truly started to enjoy football. For many years on the playground, Ben was told he couldn't play. No one would choose him for their team. It wasn't until Rylan stood up and said, I want Ben and we will play on our own team. He actually threw the ball to Ben, Ben caught it and that was all it took for our child, who has been told he couldn't to believe he could. Rylan believes in Ben and that is awesome!!

 Dominic gave Ben a gift card.  Dominic and Ben have been friends for a long time. Dominic is the most "go with the flow" child I know.  He is truly happy doing whatever. Ben can always count on Dominic to be there for him. They love hanging out together and enjoy a lot of  the same things. We love that Dominic teaches Ben to be flexible.

 Justin gave Ben some Halo guys and Halo Legos. Justin is a very kind boy. Justin was new last year at Ben's school and I love that he gets along with everyone. Justin is one of the friends at school  Ben knows he can count on.

Halloween 2012

I never thought Gabe would pick a pumpkin. He had so many he wanted to take home and had a very hard time choosing!

The perfect pumpkin

The kids abandoned Kevin to play football

Ben's Pumpkin

Gabe and Kevin ready to trick or treat!

Off they go!

 Gabe was able to go with his friend Sam, one last time. Sam's family moved the very next day to Washington.

Pool Closed-Septmber 29, 2012

The kids did not want it to close!

One last splash of water!

NOOOOOO!!!!!

Weird children

I do not like the last swim of the season. It makes me sad.  Even though I like winter and love a good snowstorm, closing the pool means having to admit, another summer has somehow past us by...

MAYO UPDATE-THE RACE CONTINUES

Ever since we have returned from our trip to the Mayo Clinic, I have been nearing a nervous breakdown- for real. I have been trying to keep a grasp on all of this but I really feel like it is all racing toward me at a pace I can not quite keep up with. I feel like I am now in a sprint to the finish line, but can't quite actually visualize what crossing it will look like. I am trying to be brave. I am trying to be optimistic but right now I am very emotional and I am starting to get scared.
Every morning when the alarm goes off, I thank God for giving me another day and everyday I get out of bed because God whispers, "Yes Mary, I do have a purpose for you." and so with that, I move forward but here are some very honest truths about my life right now.
I am sick of this race.
I am sick of dealing with this disease every single day.
I am sick of talking about being sick.
I am sick of writing about being sick.
I am sick of feeling so overwhelmed that I am losing what mind I have left.
WITH THAT SAID-
The most AMAZING thing about being sick is that I get to see firsthand how God works through others. How he takes people and places them in our lives at exactly the right time, in the way we need them most. It makes me feel so secure knowing so many people are supporting us and even better knowing that if He has to, God will carry me over his shoulder the rest of the way so I can finish.
So I say thank you-for all you have done so far, all you have offered to do when we get home and at every point in between. I wanted to let you all know, I am going to write this post and then I  will not update again until I am done with surgery and can report that I am victorious!  I would like the last 2 weeks before this surgery to be able to focus on my family and not this illness that has consumed so much of our lives lately. I would like to NOT talk about it anymore, for awhile anyway.
OUR PLAN:
On November 13 we will travel back to Rochester and on November 15th my neurosurgeon, will again, perform brain surgery through my nose.. This time, he will remove the entire right side of my pituitary gland. (partial hyphosectomy) in hopes that he will get the lesion they can  see on the MRI but also any other bad cells that could potentially regenerate in the future. Sometimes in the case of recurrent tumors, a more extensive removal of the gland is required to provide a better outcome. Recurrent tumors are usually more aggressive than the original.
 YES, I am freaking out about it AND I am very scared-BUT, no matter how scared I am, you could not convince me to back out.
The pituitary is the master gland of the body. without it, you would not be alive. Dissecting this gland is anything but minor. When we left our appointments last week, we were just so happy to have saved my adrenal glands that we did not realize that this option is only marginally better.
Removing half of my pituitary definitely has risks.
I risk destroying the whole gland and leaving my entire endocrine system without regulation.
I risk not being cured and STILL having both of my adrenal glands removed. My first surgery had a success rate of 80-90% for which I failed. This time around I am at a 60% cure rate.
I am also at risk for spinal fluid leaks, diabetes insipidus and meningitis.
I am taking a risk that my left side of my pituitary will never again "wake up" after surgery and I will have a complete loss of function and a lifetime of replacement therapy.
I am at risk for a crisis and even though my risk is lower than if I were to remove my adrenal glands, it is still a very real possibility.
I risk that the surgeon will go in and see that some of this tumor is wrapped around my carotid artery, making it inoperable and then not only would I have to recover from surgery but begin radiation as well.
I have risks even if the surgery is a success.
Even with a successful pituitary surgery I will be on some sort or replacement hormones until my left side begins to function, assuming it will begin to function. If the surgery is successful (and it will be), I will have a post operative "CRASH" within 24-48 hours, which I am told by reliable sources-(Google and my neurosurgeon himself), it is pretty horrible. They say it is like a heroin addict quitting cold turkey- fever, chills, vomiting, shaking and all of this with gauze packed in my nose to keep my brains in place. My body will freak out because it went from making too much cortisol to none at all. After this crash, and please pray that I have one, they will bring me back up synthetically and slowly wean me back down. Not many people get to say they know what it feels like to be a drug addict having never used drugs so I guess I will get to add that to my life experiences list! To be considered a successful surgery and into remission I must have this CRASH. PRAY that I have it, pray my children do not witness it, and pray that my brains stay in place.
But for now, I must stop talking about it, writing about it and  worrying about it and KNOW I have a great team backing me up and I will win this race!
More from mayo in a couple of weeks...

Winning The Race

 

 

Being ill is like running a race. You might have a clear starting point and the end in sight but no clear picture of what the race will be like, who you will be running with or against, who will stop to help you if you fall, who will cheer you along the way. and what obstacles you will encounter on your path.  My path from diagnoses to treatment plan has been long and difficult. Even now, with the end in sight I still struggle. I not only want to win this race but I want to finish in style . The pursuit of health is exhausting. You must be relentless in your pursuit of good health and expect nothing less than to finish the race. I have learned that I will not accept anything less. I have learned the power of preparing for my race, including tireless research and learning self advocacy skills. I have learned that doctors have a lot of answers but not all of the answers and that real life is never the same on paper as it is actually living it.

Cushings disease has taken so much from me. It has taken my immune system, my sleep, my life. It has put ugly names to annoying symptoms-buffalo hump, moon face, central obesity. It has made me weak, tired, sad, anxious and irritable. My life has been so consumed by this illness that sometimes I no longer want to be a part of its team.  I want to curl up it a ball and quit fighting. BUT I have to remember my whole family has my cushings disease so even if I want to quit the race, my relay team would lose as well. Sometimes I do find myself wondering, what if this disease will be my life? What if this is how I will feel forever?

Some days it is so hard to remind myself that even though this disease is a part of my life it is not my entire life. 

We know, without a doubt the BEAST is back but it has been a long process trying to figure out how to get rid of the BEAST. This has been an extremely difficult time for me because unfortunately, no matter how I feel both physically and emotionally life is still moving around me. I still have to be a Mom and a wife.  We have been in a constant phone circle with the Mayo Clinic as well as with my doctors here.  The wonderful thing about the Mayo Clinic is that they are a multidisciplinary facility. They call in the troops for each and every case.  Everyone is involved DIRECTLY with my care. Endocrinologists, neurologist, surgeons, radiologists, and those I call by name- Shirley my endocrinologists' secretary and Joni his appointment secretary- who are now both on my Christmas card list. Not one of these people are standing on the sidelines waving a flag and cheering me on, they are running this race with me. And we have a plan: A FIRM plan but one that could of course change...

The treatment of choice for people with Cushings disease (ACTH secreting pituitary tumor) is transphenoidial surgery, which is basically brain surgery through your nose. I had this surgery in April of 2008.  However, for people with recurrent cushings disease, a bilateral adrenalectomy is an option with a high rate of curing the disease not just putting it into remission. Because I have what they consider a failed pituitary surgery, this is a good treatment option for me, one that we have agreed to proceed with but one that will change my life.  On my MRI they saw a small abnormality. It could be residual tumor, the tumor could be embedded or in the cavernous sinuses. I could have the same neurosurgeon go in and identify the tumor cells visually but for my comfort level he is WAY to close to my optic chasm and carotid arteries to be "looking around" I loved my neurosurgeon, but not that much. SO my treatment of choice is a bilateral adrenalectomy and on November 14th, we will travel to the Mayo clinic to remove those two organs and hopeful get my life back at the same time.

About those two organs and how removing them is truly life changing.

 

 

 

 

There are 2 adrenal glands located on top of the kidneys.  They play a very key role in maintaining harmony. They have an outer portion(cortex) and inner portion(medulla) The cortex produces 3 hormones all corticosteroids.

Cortisol is a glucocortoid, a corticosteroid that maintains blood pressure, suppresses the immune response and is released as a part of the bodies response to stress.

Cortisol production is regulated by the pituitary.

Cortisol is essential for life.

Because of cushings disease my body makes too much, without my adrenal glands it will make none at all.Hormonal balance after an adrenalectomy is a major concern but it means I get to control how much cortisol my body gets instead of it controlling me.

MY # 1 QUESTION is, Am I trading one disease for another (adrenal insufficiency)?  After they remove my adrenal glands I will be on lifetime replacement medicine.

Cortef/Hydrocortisone: Without adrenal glands I must replace cortisol at a normal level- A happy level. Some people never find their happy.  If I am experiencing stress, I have to recognize this and up my dose and I am really not sure how my type A personality will do with this.

I will also need Fludrocortisone to replace aldosterone.

TO MAKE MATTERS MORE COMPLICATED

I am at risk to have what they call an adrenal crisis. This risk is not only possible, but probable especially in the weeks following surgery but possible for the rest of my life.

You need adrenal hormones to live. The system that pumps blood through the body can't work during times of physical stress such as illness, injury if there is a lack of cortisol (or its replacement) Risk factors for adrenal crisis include physical stress (infection), dehydration, trauma or surgery. In a crisis an injection of hydrocortisone must me given to me immediately, if it isn't, it rapidly leads to coma or death. This is a pretty serious thing to have looming over my head for the rest of my life. Lets face it, I still have to go into the quiet room at the dentist can I trust myself to inject my own body?

After surgery I will also need to wear a medical bracelet, not just have one and leave it on the bathroom counter. I will have to carry a "crisis letter from my doctor wherever I go. I will need to keep shots near me and I will have to hope that the EMT'S are trained in adrenal crisis situations because from what I have read, the statistic are not great.  Currently, they are not required to carry Solu-Cortef on board but they are also not allowed to inject my personal supply.  What do you about that little roadblock?

But we will move forward with our plan.  At the end of October, we will travel for pre surgery appointments.  We will process that information and return on the 14th of  November for surgery.  We have had so many offers during those times to help with our children but Kevin and I have made the decision to take them with us on both trips. This was a difficult decision but ultimately because of the struggles Ben is having at school and Gabe's insecurities about my health we decided we would be best together as a family. We will need help upon returning from the Mayo clinic so we hope your offers will still be good.

At this moment I can do nothing but pray.

Pray that I will get my life back.

Pray for relief.

Pray to not only win this race but to win with style.

I know nothing happens by chance: I remember reading this quote recently, "God causes things to happen at exactly the right time. Your job is not to figure out when but to make up your mind that you wont give up until you cross the finish line."

Going through this will no doubt leave scars-physical, emotional, financial and lasting.  I am not naive to think I will instantly get better. I know this is not a sprint to the finish but more of a slow and steady wins the race.

So I will continue to trust that God is in control and let him act in my life, knowing that trusting Him will bring me peace and rest and every night I will continue to ask that He helps me to trust his plan for me. I do feel your prayers and I appreciate you support.