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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...

Wednesday, June 18, 2014

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

Monday, June 2, 2014

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!