I started this blog through voice to text on my phone and now I am trying to type which is proving to be painfully slow. It's been about six weeks after my last surgery /and if you don't know by now the results came back as grade 3 anaplastic astrocytoma again. The good is that it did not increase in grade. The problem this time is that it's not operable because if they were to operate it could cause more damage than good. If you have been following, Timmy made its reappearance in the corpus callosum (read more here: http://biology.about.com/od/anatomy/p/corpus-callosum.htm ) So what does this mean now? That means the Temodar was not working and we have to switch it up and try a new treatment. Some may have been under the impression that it was gone, never to return because my last MRI was clear, but that's just the thing with gliomas. I surly was not expecting it to come back so soon. There is always a possibility of it coming back even when I finish this treatment. Now the plan is every six weeks I take a series of five pills which is the chemo and every two weeks I take a medication by IV called Avastin which is an anti-body.
Let me back up for second...since surgery I've had some deficits namely weakness on my right side. I've had some cognitive issues and I'm not allowed to drive which is really difficult when you're so independent. It's very difficult relying on others for so much. Thank God for awesome family, friends and a husband who is so been incredibly helpful through the transition . I know that my independence will come back, its gotten better already. But up until three days ago I couldn't shower by myself, I could barely dress or get myself get out a chair. These things most 30 year olds take for granted. I miss working out, I miss CrossFit. I hope to be back to that soon. I started physical therapy last week and I am already seeing improvement. Also I am hoping to get my treadmill back from my sister so I can practice walking and getting stronger.
I've only had two treatments with IV and one with the pill and Dr. says that it should I should see significant improvement in 2 to 3 treatments. Here's to hoping for the best! In all honesty one of the hardest things I've ever faced is the side effects of where this tumor is located. It affects my bladder among other things which sounds like a small price to pay for having my life to live still but it's truly annoying getting up in the middle of the night to go to the bathroom one to even three times. I take meds for that now and I shouldn't have to forever. Once the swelling goes down the symptoms should cease. Other small things that have been affected; one is my handwriting. I cannot sign my name but I know that that will come back.
When I was re-diagnosed now for technically the third time I was really depressed and didn't really want to do anything but I have so many friends and family rallying behind me and it's hard not to stay motivated and just keep pushing. I still have my faith and believe whole heartedly that if this is Gods plan then who am I to question? And I am NOT giving up. If I could inform people of one thing.. I don't know if they would understand but it takes a lot of energy to do just about anything right now including talk--although that has improved too--so if you haven't heard from me please don't take offense. People have been asking what can they do for me and if I knew I would ask but I also know that my pride gets in the way and I hate asking for help. Reaching out to hang out, go out means the world, and those who even just ask to come over and hang out is great even if only for an hour makes a difference.
I am not back at work yet, that's another place I miss a lot. But several co-workers have reached out over the past 6 weeks and for that I am grateful. Thanks as always for keeping me in your thoughts and prayers. The Devil will not win this war!!!
Thursday, July 2, 2015
Thursday, March 26, 2015
When life hands you lemons...
Recently brain cancer has been in the lime light with the stories like Brittany Maynard who was 29 and Lauren Hill, 19, among others. This has brought some awareness to the nasty disease, but like all things in the news, it too will fizzle out and be forgotten, replaced by the next big story. Bringing recognition to the rarity of brain tumors and brain cancer led me to remember that I had not written a blog in quite some time. It's been so long that I am not even sure where I left off, or for that matter...where to start this entry.
I recently completed my 8th month of chemotherapy. I have four months left to complete 12 months of chemo. I have been pretty darn blessed throughout the process. I have been lucky enough to be able to take chemo in the form of pills, take them at home, and sleep through whatever horrible things it is doing to my insides. I made the mistake one month by taking the wrong anti-nausea pill before my chemo and that, my friends, is a mistake I will never make again. I quickly discovered what I think others who do not handle chemotherapy well experience. I was hugging the porcelain throne for several hours that night. I woke up my poor husband who got a blanket and rested on the bathroom floor next to me until I was ready to try and drag myself to the bed again. It was not pretty. Other than that night I do okay. Occasionally I am more tired by the end of the chemo week, but nothing I can't handle. I also work out a lot and feel that combats most of my fatigue.
There have been a couple changes in my doctors since the last time I posted something. I was seeing a radiation oncologist, a regular oncologist, and a neurologist all in Jacksonville, FL and a neuro-oncologist in Atlanta. I loved my neuro-oncologist in Atlanta, but driving back and forth even every couple of months was getting tiresome. I found out that my insurance was accepted at Mayo in Jacksonville, FL where they have the only neuro-oncologist in Florida. I talked to my docs in Atlanta and made the switch. She was happy to hand me off to Dr. Jaekle. I now see just him. I was released from seeing a neurologist and oncologist because Dr. Jaekle is both. Dr. Jaekle prefers to do MRIs every two months (as opposed to every 3 months that Dr. Dunbar was doing). My last MRI was the end of January and all was clean as a whistle! I say, if it could be any cleaner I would be cured. My next scan is at the end of April and I am expecting similar awesome results.
Speaking of being awesome, during the past year or so I kept hearing this thing called IDH1 mutant gene. I did not know what it meant, what it was or how it affected me. I finally asked my doctor about it and discovered that it was favorable to have this gene. In terms that I was finally able to understand, my doctor shared that the IDH1 gene allowed my tumor to stay localized. What does that mean? Well, when my tumor decided to rear it's ugly face again last year, it did so on the outside of the cavity of the previous tumor. As most of you know, my surgeon was able to do yet another, beautiful, total gross resection...meaning he got all that he could see with the human eye. A total gross resection followed by radiation and chemo gives me a much higher chance of long term survival having the IDH1 gene than not having it. You can read more here: http://www.ascopost.com/ViewNews.aspx?nid=14004
Side note: this article is not in any way, shape or form representative of my doctors views. I just found this and wanted to share in case someone reading this was having a difficult time understanding what I was trying to say. Please ask your doctor about this if you have any questions.
Just as I suspected, I am going to beat this thing called cancer. Every day more and more advances in cancer treatment and care are coming out. I am blessed to live in a world where I have a fighting chance. I also have strong feelings about maintaining a positive attitude along with the treatment for the one-two-punch-jab-kick-and-upper-cut that fighting cancer needs.
Thinking back, I believe my last post was about losing my hair when I was going through the six weeks of radiation and chemo consecutively. As you might have read, going in to the third week of radiation I started losing my hair...and losing it fast. I took control and wound up shaving it. It was liberating and terrifying all at the same time. I invested in scarves to wrap my head with and did that for about 3-4 weeks before I said "to hell with it" and just started rocking it bald. I even got married bald! Once I got through the feeling that everyone was looking at me, I embraced it. It felt good to feel so strong despite being faced with such a "terminal" illness. I wanted people to ask me my story, I wanted to share with them what I have been through. I wanted them to see that cancer does not define who I am. Cancer does not define the person facing it. My name is not Cancer. My name is TARA and I am kicking cancers ass. So when life hands you lemons...make the best with what you got...be that lemonade or a lemon martini!
That's all for today, folks. I will try not to take so long next time to write another blog. :)
I recently completed my 8th month of chemotherapy. I have four months left to complete 12 months of chemo. I have been pretty darn blessed throughout the process. I have been lucky enough to be able to take chemo in the form of pills, take them at home, and sleep through whatever horrible things it is doing to my insides. I made the mistake one month by taking the wrong anti-nausea pill before my chemo and that, my friends, is a mistake I will never make again. I quickly discovered what I think others who do not handle chemotherapy well experience. I was hugging the porcelain throne for several hours that night. I woke up my poor husband who got a blanket and rested on the bathroom floor next to me until I was ready to try and drag myself to the bed again. It was not pretty. Other than that night I do okay. Occasionally I am more tired by the end of the chemo week, but nothing I can't handle. I also work out a lot and feel that combats most of my fatigue.
There have been a couple changes in my doctors since the last time I posted something. I was seeing a radiation oncologist, a regular oncologist, and a neurologist all in Jacksonville, FL and a neuro-oncologist in Atlanta. I loved my neuro-oncologist in Atlanta, but driving back and forth even every couple of months was getting tiresome. I found out that my insurance was accepted at Mayo in Jacksonville, FL where they have the only neuro-oncologist in Florida. I talked to my docs in Atlanta and made the switch. She was happy to hand me off to Dr. Jaekle. I now see just him. I was released from seeing a neurologist and oncologist because Dr. Jaekle is both. Dr. Jaekle prefers to do MRIs every two months (as opposed to every 3 months that Dr. Dunbar was doing). My last MRI was the end of January and all was clean as a whistle! I say, if it could be any cleaner I would be cured. My next scan is at the end of April and I am expecting similar awesome results.
Speaking of being awesome, during the past year or so I kept hearing this thing called IDH1 mutant gene. I did not know what it meant, what it was or how it affected me. I finally asked my doctor about it and discovered that it was favorable to have this gene. In terms that I was finally able to understand, my doctor shared that the IDH1 gene allowed my tumor to stay localized. What does that mean? Well, when my tumor decided to rear it's ugly face again last year, it did so on the outside of the cavity of the previous tumor. As most of you know, my surgeon was able to do yet another, beautiful, total gross resection...meaning he got all that he could see with the human eye. A total gross resection followed by radiation and chemo gives me a much higher chance of long term survival having the IDH1 gene than not having it. You can read more here: http://www.ascopost.com/ViewNews.aspx?nid=14004
Side note: this article is not in any way, shape or form representative of my doctors views. I just found this and wanted to share in case someone reading this was having a difficult time understanding what I was trying to say. Please ask your doctor about this if you have any questions.
Just as I suspected, I am going to beat this thing called cancer. Every day more and more advances in cancer treatment and care are coming out. I am blessed to live in a world where I have a fighting chance. I also have strong feelings about maintaining a positive attitude along with the treatment for the one-two-punch-jab-kick-and-upper-cut that fighting cancer needs.
Thinking back, I believe my last post was about losing my hair when I was going through the six weeks of radiation and chemo consecutively. As you might have read, going in to the third week of radiation I started losing my hair...and losing it fast. I took control and wound up shaving it. It was liberating and terrifying all at the same time. I invested in scarves to wrap my head with and did that for about 3-4 weeks before I said "to hell with it" and just started rocking it bald. I even got married bald! Once I got through the feeling that everyone was looking at me, I embraced it. It felt good to feel so strong despite being faced with such a "terminal" illness. I wanted people to ask me my story, I wanted to share with them what I have been through. I wanted them to see that cancer does not define who I am. Cancer does not define the person facing it. My name is not Cancer. My name is TARA and I am kicking cancers ass. So when life hands you lemons...make the best with what you got...be that lemonade or a lemon martini!
That's all for today, folks. I will try not to take so long next time to write another blog. :)
Tuesday, July 1, 2014
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
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
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.
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!
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!
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...
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.
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.
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