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.