Radiation Beast--a poem

I do not know if I am ready

For what’s about to happen

I thought I was strong, but this…           

This has been harder than expected

A battle arises within me

A trial that could be trapping

One side of me says, “Give up”

While my God is saying, “Let not your joy be affected”

I cry because I was torn

Not in my faith, but in my direction

I may be losing my hair

But My God sees me as perfection

I took control when I let it go

My hair is not what defines me

My trust is in You, God

As I read James Chapter 1, verses 2 and 3

So understand this,

Please hear this above all

I will continue to persevere

I will continue to stand tall

There is no sickness in this world

That can take away my content

No cancer too mean

For my will to live is relentless

 

They don't teach you this in school

As many of you know I am a licensed mental health clinician (LMHC). I went to school at the University of North Florida for both my undergraduate in Criminal Justice and graduate in mental health counseling degree. I have worked at the Florida State Attorney's Office in Jacksonville as a case manager in a juvenile delinquency program for troubled youth, at River Region as an addiction/co-occurring counselor for youth and for adults, and at two private inpatient programs for addiction and mental health disorders as a therapist. Currently I work as a mental health specialist for a new helpline serving our military who have served post 9/11 and their caregivers through the wonderful organization, Wounded Warrior Project.

I learned quickly that it takes a special kind of person to have the compassion to help others while also focusing on self care so not to get burned out or get what they call compassion fatigue. Basically I learned that at the end of the day I need to leave work at work and focus on me, my family, my friends and what I like to do outside of work. This goes for anyone in social services and sure, it's easier said than done sometimes. From what I've been through in battling brain cancer (now twice), college programs geared toward helping others such as in social services should put more focus on self care. Here's my story as to why:

So far in my journey with Timmy the tumor, I've taken things in stride. I've cracked jokes, been very open about my experience, and maintained a positive attitude and outlook on life because of my faith.
I do not fear death. I do not expect death even though statistics show the outcome is often inevitable in 2-3+ years with a grade III anaplastic Astrocytoma. I said, "no big deal, bring it on!" when the doctors suggested I do 6 weeks of radiation and chemotherapy, then chemo again for a year following. I was apathetic when they said I would lose my hair..."it will grow back, no problem," I thought. WRONG. Regarding this, that statement couldn't be more wrong. Yeah I was apathetic to the thought, but that in no way prepared me for what I was about to face. It happens suddenly. I had heard that from personal accounts, but a voice in my head always tried to deny it and downplay the idea that it would happen to me. Surly I could be the 4th person in my radiation oncologists career that would miraculously still have all their hair at the end of 6 weeks. Yeah...no. I'm almost a full three weeks in and my hair started coming out in handfuls two days ago. Now I have a lot of hair...but in just two days, I feel like I've lost like half my hair on the left side of my head... there are bald spots. No big deal, right? It's not noticeable yet...still couldn't be more wrong. This totally sucks. In my heart I know it's not the end of the world, hair grows back, relax. In my mind I'm screaming and crying at the thought. Pulling out fistfuls of hair is not right and it's not easy no matter how you look at it. I battle with whether or not to shave it now and keep from re-traumatizing myself every time I take a brush to my head or wait and see what happens in the next couple days.

The hair loss, I have found, is my weakest link fighting this disease. Seems so trivial and materialistic after all I've been through in the past 2.5 years. I can't even pinpoint why it carries more of a shock value than the diagnosis itself. Maybe because without hair I will actually "look" sick? Maybe because I feel I've been in control up to now and I can't control this? Don't get me wrong...I know God is in control, my heart knows. Jeremiah 29:11 says "for I know the plans I have for you, declares The Lord, plans for welfare and not for evil, to give you a future and a hope." But even beautifully written scripture--words of truth and promise--doesn't take away the struggle I feel internally right now. I will continue to seek answers through Christ, even in and especially with this fight. I do not question why I was given this disease or think it unfair that I have brain cancer. That truly has never crossed my mind. But dang it if the symptoms of treatment don't suck! All the while I still have much to be thankful for: no nausea, still able to work out and was released to play soccer, I am back at work and loving every second of it, I am able to walk, run, do activities even though my right side from my armpit down (my foot is the worst) is numb. I am thankful to the Man above for all that I have.

I supposed I can look at this as another one of those scenarios that "you never know what you had until it's gone" kinda thing, but in a positive way. I could likely make a list of pros and cons and make my decision based on the outcome. Pros: it will grow back, learning to love myself as the same but yet a different me,  less time to get ready in the morning, not having to spend money on shampoo or conditioner right now, finding and matching head scarves to my outfits, wearing really big earrings because I can and my hair won't be in the way, etc. Cons: unsure how, when, or what it will look like when my hair grows back, being self conscious out in public. I could also flip a coin--to shave or not to shave...in the end, I think the outcome will be the same...it's time to let it go. Live and let live. Deep breath...hold....and release. Everything is going to be okay. It always is.

Sincerely,

Tara

Stop, Reflect, Redirect

I am going in to my 8th week post surgery, 9th week out of work. To be quite honest, I am going stir crazy. I want to go back to work, but my nuerooncologist recommended I wait until after treatment. I decided to wait until mid way through treatment to decide whether I can handle it AND work, but treatment has just started. I was hoping to start the chemo and radiation over two weeks ago, but I was finally able to start treatment last Thursday after being told over and over "they are working on your treatment plan." After the last time I was told that, I made a call to Piedmont and asked if it was normal to wait so long. I heard back from Baptist 20 minutes later and started two days later. This is not a rant on Baptist, because I LOVE Baptist and would recommend them to anyone going through something like this. I am more or less ranting because I just want to go back to work.

People keep saying, "take care of you," "clean 'this' or read 'that' book you haven't had time for," "do things you never get the chance to do." And that's okay, I understand where they are coming from. But what I want is nothing more than to get back to doing what I love and that is working at WWP as a mental health specialist. No, work does not define me. I live for a lot of things in life and work just happens to be one of them. Not everyone gets to say they do what they love everyday. Not everyone gets to say they enjoy getting up in the morning and fighting traffic just to go work. Not everyone gets to say they are employed with an organization and with people who have a common goal and mission to make others' lives better...more importanly making the lives of the people who serve this great country and their families lives better. When I am at work I get to help warriors and their families understand why they feel the way they do, how to accept and work through their new normal as they battle the loss of a limb, loss of a loved one, or struggle with PTSD, anxiety, depression, etc etc. I live for that. I don't live for the paycheck every two weeks. I live to make a difference and I am blessed enough to be able to do that with my career.

Aside from that I will tell you, one of the hardest parts about right now is the fact that I don't look sick. Not that I want to look sick or even feel sick, but at least if I did people would understand why I am on short term disability and maybe I would not feel so guilty about not working. I feel like when people ask me how I am doing I shouldn't answer with "I feel great" or "I am doing great." But it is the truth. After surgery, I was walking the following day. I had surgery on a Thursday and stopped taking pain meds that Friday (it helps that I can't stand how they make me feel). Three weeks after surgery I was back to working out and doing crossfit a couple to three times a week. I haven't slowed down a beat. I now wait with anticipation that I will tire easily from the treatments or get sick from the chemo. So far, neither has happened and I hope I continue to defy the statistics. Time will tell.

With all that said, I would like to share of the many blessings that have happened while I have been out. A few weeks back when I was told to prepare to lose my hair from the radiation, my step dad suggested that Anthony (my fiance) and I try to have some wedding pictures taken. I set out to try and make that happen. And for the first time I became overwhelmed emotionally...not because I might lose my hair, but from the outpouring of love and support I had been recieving from friends, family and total strangers. I called Men's Warehouse in Orange Park and in telling them what I was facing was able to get Anthony's tux donated for the day (the manager I spoke with was so warm and accomadating, and was currently battling his 4th time with cancer). Our wedding photographers did not even hesitate to come and take pics separate from our engagement and our wedding day. Our venue graciously opened their doors so we could have the pictures taken where we are set to get married in September. A friend of our photographers offered her make up artistry for the occassion and my dad's girlfriend offered to pay to have my hair done. It was so wonderful and on a perfect evening we were able to have formal wedding pics taken in the event that I do not have hair for our actual wedding. I cried. I. cried. I had called my sister to tell her and invite her out to be apart of the event. At one point in the conversation, I again became overwhelmed with emotion and had to choke back tears. She realized I was crying and was speechless, she said "uh, uh, I don't know what to do or to say. You don't cry. I am the crier." I laughed out loud because it's true. This was the first time since my second diagnosis that I had cried. It felt good, but it didn't last long. They were ineed happy tears and I had so much to smile about!

Also since then I finally completed the process to officially recieve my Florida License for Mental Health Counseling (LMHC). That has been many years in the making. I had taken and passed the exam in January, but then got side tracked with the seizure, MRI results, surgery, and brain cancer diagnosis. But I could not possibly let my hard work go to waste! It feels great to have that little piece of paper that says I am a licensed clinician.

During this process, I have also joined several support groups through FB (I continue to attend Sontag Brain Tumor Support group monthly) and it has given me an outlet when needed, but moreso it has given me hope. So many times I read stories of those who defy the statistics. It helps to have other survivors share their experiences. While every person diagnosed with a brain tumor and/or brain cancer has a different experience, reading about someone who has the same diagnosis and is a many year survivor makes me happy. It is a constant reminder to not give up.

There are so many things to be grateful for each day. I may have started this blog a bit on the negative side, complaining about being out of work, but inside I know I am blessed. All I have to do is look around and reflect within and I realize I am blessed beyond words. I began a challenge (as seen on FB) to identify 100 things that make me happy in 100 days #100daysofhappy. This, too, has helped me stop, reflect, redirect negative thoughts and remember to count my blessings. Without a doubt 9.5 out of 10 days I am doing and feeling wonderful. But being human allows even the strongest and most positive people to have their down days.

Here is my quote for today: "There are exactly as many special occasions in life as we choose to celebrate."

Make today a day to celebrate. :)

See you all next time! Love and hugs!

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...

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...

I knew this day would come eventually...just not this soon

Hey Timmy followers:

I feel I should start this entry with a reminder. A reminder that on October 8, 2011 I was involved in a car accident that saved my life, a car accident that lead me to the discovery of a brain tumor that otherwise could have killed me later. Instead, God gave me a fighting chance by showing me early in its stages. And for that I am forever grateful.

The journey thus far has also been just as much a blessing as finding it. I had a total gross resection on April 26, 2012. Because the entire tumor was found to be all grade II I did not have to follow up with chemo or radiation, rather I just needed MRIs every six months. No big deal. Thank you Jesus. I was driving again two weeks after surgery and back to work four weeks later. Amen.

On my one year scan, the surgeon who took the place of Dr. Chandler at Lyerly Neurosurgery, Dr. Petre, requested I follow up again in three months instead of six months. He had seen something that could be a concern. I did as requested and in July 2013 I was cleared to go back to every six month scans.

Fast forward 7 months, I had a MRI scheduled for March 21st. Again, The Lord had different plans and on March 8, 2014 my fiancé, Anthony, awoke to a weird screaming or grunting sound I was making. It startled him to find me staring wide-eyed and unresponsive. By his account he tried to shake me, speak loudly, anything he thought he could do to get me to come to. He began asking me questions about my work, what I did, who he was, who I was...things I would..or should know. He said I kept repeating my name over and over. I then would repeat, "I'm sorry, I'm sorry." Also by his account I became agitated and angry at one time, so much so that he backed away from me out of fear. He continued talking to me and with me. Eventually, and my first memories of coming to were of being frightened and confused. I remember being convinced that someone was in the house. Anthony lead me around the house, I wouldn't let him let go of my hand, to show me no one was there that could or would hurt us. He said I hugged the wall the entire time out of my own fear. Once settled he suggested we go to the ER for what he assumed was a seizure. And so we did.

At the ER I felt fine...if anything I was exhausted because we had only been sleeping for an hour before this happened. Anthony told his story to the doctors and they admitted me. They completed a CAT scan. Nothing. They ordered an MRI...that took forever. And no results were ever read. They wanted to keep me overnight. I opted out and decided to follow up with my care team at Baptist instead. So I signed out AMA (against medical advice) and went home with instructions to not drive. Yeah. Ok.

I called my surgeons office secretary and explained my circumstances. She referred me to Baptist Neurology. Made and went to an appointment that Wednesday. To try and shorten the story, the neurologist assumes by my account that I likely had a complex partial seizure. Greeeeat. I needed to follow up with another MRI,  blood work, an EEG, my surgeon and an oncologist. Wait...what? An oncologist? But I've never technically had cancer. The next day I called to schedule an MRI and the one I had scheduled for March 21st got quickly moved to March 14th. And so I went. Not 4 hours later my surgeons office called saying Dr. Petre needed to see me and the soonest he could get me in would be March 17th at 9am. This. Can't. Be. Good.

I go in to see Dr. Petre with my entourage...because I don't go to these major appointments without my dad, mom and step dad (my sister and niece would have come but decided they might be more of a distraction at this point and I told Anthony not to come since we already look like a circus act rolling thru hahaha!!). He comes in to the room and wastes no time saying that the image came back with some concern for the same spot he saw several months back. But I thought it wasn't there in the last one I did. He showed us the scans, side by side. Pretty clearly I saw the spot. It was right on the side of the cavity of the previous tumor. It wasn't until after seeing the MRI that I asked if he even had info on the fact that it is assumed I had a seizure the week before. He was not aware of my incident and that's why I had the MRI and what I was there to address. Prior to me telling him that he was offering options like waiting and watching, radiation, OR surgery. After hearing about the seizure...options were kinda off the table. We needed to get in, get it out and find out what, if anything this spot was. He (or someone) is going to have to perform a craniotomy...on me...again.

A lot of people have been asking me how I feel. Honestly, I feel okay. I can say it's a little strange that Timmy is trying to make an appearance so soon. Dr. Chandler estimated at least 5 years before we might see something again. But, At this point there is no real reason to panic. We don't know what we are dealing with until we get it out. Only then will we know if I will need to follow up with chemo, radiation, etc. I very well could only need continued follow ups and MRIs again. Who knows? God knows. And in HIM I still and will always trust. He has written my book. This is just another chapter. This time could be worse or it could be just as good as before. This time I could have more deficits or none at all. What I do know is that I'm ready. For anything...I am ready. I will not lay down and give up, I will continue to fight as I always have. I will expect the best and pray for my family and friends enduring this who feel helpless as they wait and watch. Do me a favor...wait upon The Lord, look upon The Lord, lean on him and do not grow weary. He comforts those in need. That is why I do not fear, I do not worry, I do not hold on it what could be. What will be will be. My faith is in Him.

As of right now my surgery is scheduled for April 8, 2014. Could have been sooner but I have a 5k to run in Tampa on March 29th for ABTA and I don't plan on missing it. :)

On a lighter note, Anthony and I have set a date and we are getting married September 19, 2014. Woo!! Good thing we started planning this thing early! Pretty much all the details are done, bought and paid for with the exception of the rest of the venue and food. Yay us!

Stay tuned.