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Hey guys! Thanks for checking out my page and following my journey. It's been an insane ride so far, but it has only just begun! Writing a blog and keeping my friends and family updated on my status is important to me, so here we go...

Sunday, April 20, 2014

Another day, another experience, but a whole different perspective...

I hear and see things differently now. I made mention of this in a previous blog post a long time ago when I was first diagnosed with a Diffuse Astrocytoma Grade II brain tumor, but I am reminded of it again following my recent adventures with Timmy the tumor. I hear songs on the radio and they mean different things to me now than they ever would have before this journey started. Songs like "I'll love you through it" by Martina McBride or "It was you" by Garth Brooks or "Live like you were dying"  by Tim McGraw.

I see things in a different light, with a more tender and understanding heart; I feel more forgiveness than I ever have and it is comforting. I see the yellow flower on a cloudy day, the one that stands alone among dead grass, loose dirt...I see the flower that otherwise by all accounts should not have survived where it grew and realize that on that day I saw that single, lonely flower on that nasty, cloudy day it was God. It was God showing me that I need to remember Him in those times...in the times when there seems to be no hope and remember He is the answer, He is the way, He is the life.



Then I wonder Why don't more people see and hear and feel the way I do? I have to remember that for most people it takes a traumatic event of sorts to help them realize the beauty in things, to truly not take things for granted the way our society tends to, to develop patience, kindness, inner peace and deep love. That traumatic event can be loss of a loved one, serving in a war albeit Iraq or Afghanistan, any war for that matter...or as it was for me, that traumatic event can be a brain tumor diagnosis.

If you have been following me, you are aware that my medical team discovered a new spot in mid March following a first time seizure. It was recommended that I go through with a second brain surgery to remove the tiny spot and test it in order to determine if further treatment would be needed. The tumor they resected April 10, 2014 came back from pathology as a Grade III or now what is called Anaplastic Astrocytoma and is considered malignant. Grade III cells "are abnormal and tend to grow rapidly. They often invade healthy brain tissue and have a tendency to recur." Anaplastic Astrocytomas "grow more rapidly and aggressively than lower grade astrocytomas. The term anaplastic is used to describe cells that divide quickly and do not look at all like the normal cells. They tend to invade surrounding brain tissue, which can complicate surgical removal." My overall surgery went well as they were able to, again, do a total gross resection...which means Dr. Chandler was able to remove all of the tumor that he could see. I have some deficit this time around that I did not have last time. I have a lot of neuropathy on the right side, primarily in my leg and foot. It makes it very awkward to walk, balance, but mostly it makes it feel numb in a sense on that side. It's not painful and for that I am grateful. It feels like my leg and foot is in a constant state of that "being asleep" feeling when you have sat on it too long. Outside of that, I have been told no more driving until September which will be the six month mark from the time I had the seizure. For me, that's the most difficult. Not being able to drive is a total loss of freedom. I am not one that likes to rely on others, but here I am, totally and utterly reliant on others for transportation to anywhere...which includes when I am released to go back to work (hopefully soon). Although difficult, it has been easier to avoid driving at least the past week because my right side is numb. The neuropathy will hopefully subside over time. Otherwise, I don't notice other deficits that are worthy of mentioning.

So, what does all this mean? Well, I will have to go forward with treatment including radiation and chemotherapy. I don't know exactly what that means just yet as I have my follow up appointment on April 26th coming up, but my understanding is it will likely be radiation every day for 30 days and then a chemo pill that will be 5 days on 23 days off for something like a year. I have read and heard a lot about different side effects, but there is no reason to harp on or worry about those until they happen (I am sure there will be another blog about them entirely). It also means absolutely NOTHING. Knowing this information means nothing at all. I have been witness to loss from this terrible disease, but I have also been witness to the unshakable promise that God will see us through this terrible disease regardless of statistics. So all the information in the world means nothing until something happens. I am armed with a great medical team and will pursue treatment as needed. I am blessed with an incredible team of support of friends and family and even strangers that have and continue to pray for me and keep me in their thoughts (many of you reading this right now). I read a quote recently that I love: There isn't enough room in your mind for both worry and faith. You must decide which one will live there. I choose faith.

You may be reading all of this thinking that I have been dealing with this whole situation intellectually...without feelings to an extent. That may be partly true. Being a therapist by trade I have a tendency to be more concerned with others than with myself. I worry more about my family my fiance, my friends and how they are going to handle this experience.  I recognize this battle is just as hard, if not harder on them, as they watch helplessly. As weird as it may sound, I am truly thankful that it is me walking this journey and not them. When my friend (who is also a therapist) asked me how I felt the other day I deterermined I was indifferent. I can assure you all that my diagnosis does not come without its fair share of concerns at times, maybe even a few tears and worries about the future. Hell, I am getting married in 5 months! Will my hair fall out before my wedding? Will I live long enough to be an awesome wife to my soon to be husband? Will I have the chance to be a mother? What will I be remembered by? What kind of legacy will I leave?

With all of that being said, I think I have gone on long enough for this post. I could probably keep going, though, but what would I write about later if I get it all out now? :) I will update more as I know more information about upcoming treatment and side effects. Stay tuned and as always, thanks for your continued support, love and prayer. All my love...

Tuesday, April 8, 2014

Come Thursday Morning (a poem)

As I lay me down to sleep
I pray that all my friends You'll keep
Safe from harm and intrusive thoughts
Let them rest and find them peace

Calm them with Your words I pray
My family, too, in Your arms they sway
To give them comfort, guidance and love,
To understand Your way

This journey I am on has more questions than not
But neither fear nor uncertainty has this chapter taught
Rather tranquilty and assurance have You lead me to
For should I pass on, a life You will give me anew

Streets of gold and pearly gates
Are a promise from You that You will surly make
But who knows what the future will bring
No matter the outcome
Death has lost its sting

I pray to You, Lord, if this shall be my time
Please comfort my friends and family
Those I call mine in this time
For it is with them where my worry lies
Because with You I would be an angel, I would fly

My loved ones may not understand Your design
And if I am honest, neither do I
But in You I will continue to trust
For it is Your plan for me, for them, for us.

Amen.

The night before 2nd craniotomy update

Good evening to all of my Timmy followers:

I thought I would take the time to update those who want to know about my progress before my surgery. So, if you read my last post it said I was scheduled for surgery on April 8th. Well, after finding out that my insurance was taken at Piedmont Brain Tumor Center in Atlanta, GA I decided to grace Dr. Chandler with my presence once again. Everything happened very quickly and once I made the decision I had to schedule a consultation with Dr. Chandler (my surgeon), Dr. Dunbar (the neuro oncologist who specializes and only focuses on brain tumors), pre-op, and another MRI as well as the surgery. Anthony, my dad and I packed up and drove to Atlanta this past Sunday, April 6th in preparation for the appointments and the surgery which is now scheduled on the 10th. My mom, step dad and sister will be joining my "Timmy entourage" tomorrow (Wednesday).

Thank goodness for my very good friends, Lindsey and Will and their two daughters, for their unbelievable hospitality. They have blessed us with a place to stay for free for the week while we are here. A lot of this would not have been possible without them. THANK YOU Lindsey, Will, Mia, and Livy!

So, I had my appointments with Dr. Chandler and Dr. Dunbar yesterday. Got a big hug from Dr. Chandler! He is so awesome...while I was eager to discuss what was going to happen come day of sugery, he was eager to find out what I had been up to the past two years of my life instead. After telling him about the birth of my niece, passing the Florida state licensure exam for Mental Health Counseling (LMHC), starting an incredible career with Wounded Warrior Project, staying active with soccer and crossfit, and of course GETTING MARRIED in September we were able to discuss Timmy. He and I reviewed the past couple of weeks of craziness that started this mess from the night of the seizure (March 8th), the trip to the ER with a CAT scan and MRI, the meeting with Dr. Nijjar (nuerologist/ March 12th), the 2nd MRI with Baptist (March 14th), the call from Dr. Petre 3 hours later (nuerosurgeon at Bapist that took over for Dr. Chandler when he left to go to Piedmont), to the meeting with Dr. Petre(March 17th) in order to discuss the infamous new spot and treatment options. After meeting with Dr. Chandler Monday, I immediaely met with Dr. Dunbar. She basically reiterated everything Dr. Chandler said, provided me with a ton of information on my type of tumor, and agreed that sugery was the best option because until we know what it is we can't really discuss options for "treatment." What I do know is that I will have to do radiation and chemo if it's a higher grade and if it is the same low grade then I could just continue with MRI's as I have been. Regardless, literature and research do not show favorable long term outcomes. But since when I have I fit statistics?

Today I had yet another MRI that they will then use for the sugery itself. I had what they call a functional MRI on top of the with and without contrast MRI. Basically, in the functional MRI, they have you tap your fingers and wiggle your toes that light up the parts of the brain that control that part so they can avoid causing as much damage as possible to my right side since that is my dominant side. The machine they used, I was told, is one of three of the same, unique and most powerful MRI machines in the state of GA. It was crazy loud and a crazy long process...like two hours. Now, tomorrow I just relax, enjoy my stay and wait for Thursday when the surgery is scheduled. I have to be at the hospital at 5:30am Thursday, surgery is scheduled for 7:30am. Dr. Chandler does not believe the surgery will take longer than about an hour and a half. He expects that I will be up and around by the end of the day and said I may be discharged by Friday if all goes well. It will all depend on the surgery and again, we won't know until we know.

Other than that, it is just a hurry up and wait type thing. And that's what we shall do. Hurry up and wait for the pathology results, hurry up and wait for the treatment options...but I will not hurry up and wait to live life. I will continue living life as I always have. :) Goodnight folks!

 Until next time...