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One year later! How LIFEtime flies…

Looking at the clock this morning was almost surreal. Exactly one year ago I was waiting to go into an awake craniotomy not knowing what was on the other side. I’ve always heard of things like this taking over people’s lives and now I understand how and why. None of us (that these medical issues happen to) expect to get “lost” from friends, time just seems to get away from us faster than most. 

At times this year it has felt like the days, hours even minutes were almost at a standstill. Our calendar was set around doctors appointments and they were always the boss. I’m sure for those that were helping me and enduring the worst with me it felt like time crawled. I wouldn’t be the best judge as words were even a feat at one point. During chemo and radiation treatment we kept a countdown of how many more sessions left, which had the opposite effect, time seemed to go by faster each day somehow. All mind games I suppose, something to look forward to. By then we just started waiting for the next doctors appointment to get results of the treatment. When we heard the words ‘we got it. Looks good’ and ‘REMISSION’ hit me it felt like a giant weight lifted and the clock stopped.

Now it all just seems like a blink of an eye. One year, really? Already? I feel like I need to double check it really happened but NO trust me I AM SURE (I have the barely there scar to show). I’ve been lucky enough to have made it through the surgery, my treatment and now get back to normal life. I still stand by my thoughts a year ago, glad it was me. I would not change the past or what I went through for anything. I take those lessons as memories and look forward to molding them into my future. I can’t wait to see what the next year brings. 
-V 😊

“Scars have the strange power to remind us that our past is real” – Cormac McCarthy

LIFE of a new patient!

Woohoo two month mark today!!! I’ve officially made it to the two month mark without driving myself insane with cabin fever, ignoring all the doctors rules, or snapped at any (Okok all) of their employees.

I had been going to the same doctors for so long that I had forgotten how difficult it was to be a patient. Much less a new patient! Patients need more help out there! Advocates! Real help! Someone to really be on their side and look out for them. Ask questions! Really get answers and research! Push until they get the right things done for them!

Lately I’m pretty sure I’ve broken a few rules of my recovery “stay calm” & “relax” because some of these doctors just drive me totally insane!! And their offices and employees aren’t very far behind. Maybe that’s why I ended up with so many 2nd, 3rd, 4th, etc opinions when this whole process started years and years ago.

At this point unfortunately it feels like I’m on the dueling dragon roller coaster just got off one color getting onto the next. Just when we make one life changing decision and get that out of the way now it seems there will be a whole new series of doctors and decisions.

It will be a bumpy ride but we will definitely take the same route as the first ride… keep looking for all opinions until we are happy and comfortable with what we’ve found. I was lucky to find a great medical team the first time around and am sure I will find a great one the next time around, especially since the first are sticking around.

At the end of the day… Two months… Wow! 🙂

Treatment to End Cancer. Start Life. Day 1.

Today is day 1 of 42… countdown of Chemo and Radiation. This treatment will get us through part 2 of 3 of what needs to be done to hopefully bring this whole tumor/seizure storyline to a happy ending.

Crazy to think (coincidence huh) that officially 4 months ago today, May 29th 2014 I wrote this post:

“Scariest day ever is officially here. Not sure how to feel sitting in the car on the way to surgery I can’t say it’s a feeling I have ever experienced. Deep down I know it has to happen, has been a long time coming, I am as prepared as I’ll ever be, I have an amazing medical team and support system in place and look forward to starting life after seizures. I just can’t shake this logical fear of walking into the unknown with a bagful (yes not a handful) of questions…”

It is partially still correct. It is still scary steps to take or unlike any experience I’ve ever had or wish on anyone. I know it is the right thing to do and am ready. Very happy to say that surgery is WAY is over. While the medical team around for surgery are still around there is a new set added for chemo/radiation and they are just as amazing. My silver lining support system to EVERY cloud, don’t know where I would be without them is still shining. Happy (knock on wood) to say that since surgery and a few of those first speed bumps I haven’t had any seizures either. We somehow fought out of the last unknown. We’re heading into this one with a lot of more questions, more answers, a lot more knowledge and counting days. We’ll make it out of this one too.

Four months ago I wished I had written more, this time, I’m glad I did. Now I’m hoping to DO more after. To take all the questions, the answers, all the knowledge I learned, all these amazing people I’ve found along the way and put it somewhere to use.

I find it only fitting that my posts end the same on such a day…

“I realize I’m actually lucky it was me. I’m extremely emotional and would probably give a limb for anyone I love; definitely would not be ok sitting this out on the sidelines for someone else so I’m glad it was me not them. I’m glad I have been blessed with an amazing life, friends, family, and doctors. I’m ready.”

-Vane

IT’S YOUR LIFE!!!

If you don’t read all the way through the end of what’s written below please take one thing from this… THIS IS YOUR LIFE! THIS IS YOUR BODY! YOU HAVE RIGHTS! One of those rights (especially with doctors and medicine) is to ASK QUESTIONS, EDUCATE YOURSELF, GET OTHER OPINIONS, and BE COMFORTABLE with whoever is providing your treatment!!

I’ve been holding this post for the longest time because I’ve wanted to gather as many details as possible and really “finish” it but at this point it’s still not complete and won’t be due to medical decisions being made, we will be moving forward without it being complete by MY CHOICE. Two weeks after brain surgery I was looking for pathologists and oncologists due to the initial results from surgery. My case required additional post surgical treatment to best cure my tumor. I did get my doctors recommendation of process and place to go because there is an order to these things, so we began.

Just as a disclaimer: 5 years ago when I first got diagnosed with a brain tumor I went to 5 opinions for surgeons before not even having surgery until this year with the 1st surgeon I saw back then. The whole time I continued to see my doctors, ASK QUESTIONS, they were informative and more than willing to answer them. You’d be amazed at how many new questions you can come up with over time. I fully intended to do the same this time…I understand the urgency and importance of post surgical treatment BUT I refuse to take the first treatment plan thrown my way or prescription a doctor gives me without completely understanding why or what other options I have or who else is out there. 

Unfortunately the most frustrating part of this has been the wait between the different steps (in the correct order), finding the correct type of specialists, getting appointments, having to revisit doctors for results, and then getting answers; all the while receiving calls from the first doctors trying to reschedule for treatment, does no one understand ‘I’ll call you when and IF I’m ready?!’.

What the follow up treatment in my case requires is (1) Radiation and (2) Chemotherapy, preferably with a set of doctors that work together which is not a requirement but just for my peace of mind and less need to play messenger between two offices.

For me this process started by my first consultation appointment on June 18th 2014, I attended that visit with the 3 pathology reports and all hospital records I had from my discharge. After 2 more very lengthy repetitions of the pathology reports at different locations, 3 visits with Radiation doctors at different locations (over 4 appointments), 2 visits with Chemotherapy Oncologists at different locations (over 3 appointments), 1 attempted Chemotherapy Oncologist visit which I was unable to get an appointment for we get to today. While attempting to get at least the 3 sets (Radiation/Chemo) doctors recommendations and that just didn’t happen I’m officially ending this searching process on August 28th 2014 since I found the best match for me. I found those doctors that answered all my questions, provided all the information I needed (and more), made me feel comfortable, are willing to work with my current medical team, situation and made me feel like I am in control of my own treatment.

It’s scary that there are these big institutions standing behind their names, history and reputation where people blindly depend on to make the right choice for them. Then there are the complete opposite,  small, cutting edge, feel like home doctors doing the same thing. At the end of the day it’s a gamble really isn’t it? One of my doctors told me ‘It’s MY decision to make, not anyone else’s’ my response was very clear to him that I am NOT at all qualified to make any of these decisions, I didn’t go to school for years, I don’t know these terms or medications. But he was right… I know ME.

During this 3 month process of the unknown, fear, research, questions, appointments, answers and frustration I can’t help but think about those out there that can’t/don’t/won’t, those that can’t take the time to go see multiple doctors (face it — NOT EASY) , don’t have the time this all took to research/put together, won’t know what questions to ask each doctor, don’t have someone there to help them do so, won’t do so for any reason or are just not able to do so for themselves.

It makes me more grateful that I have had the ability and support to do all of the above. It makes me even more sad that I know most don’t have the ability, desire, understanding, support or awareness to do all of the above. And everyday I can’t help but think there has to be someway to make this happen. If you know anyone that has a medical condition or something going on in their life encourage them to do something about it, but remind them that it’s THEIR decision… ASK QUESTIONS, EDUCATE THEMSELVES, GET OTHER OPINIONS, and BE COMFORTABLE with whoever is providing their treatment and if they can’t, we’ll find them someone who can help.

LIFE with a Master!

Again a late post yet super proud and couldn’t skip it! On August 4th Amanda, my little sister, officially graduated with a Masters degree from FIU!! I am normally a crazy photoholic but this graduation was just bad, I blame Mauricio for being an enabler and giving me the camera with good zoom. She’s worked her butt off and got to walk across that stage with very few that day with the same achievement. Watching her walk across and hearing her name be read a million thoughts ran through my head (aside from hating the guy that got in my perfect camera shot and almost made me fall down the bleachers to get another).

I can’t help remember that little girl that always ran around with my friends while we were doing our school projects. The little sibling that took forced pictures making faces at my graduations, school events, etc of us leaving the house before they actually meant anything to her. The one that took over our shared room when I moved away to college (before I even got out of the zip code). It just made me think that this real, for normal non-Miami families, life would be it. How many times our parents said they would fully support anything and everything we needed while we were full time students. That we kept living together at our parents home and said we wouldn’t move because life didn’t really start until after college. Now, technically, real life starts for her.

Although I don’t think we ever actually “finish” learning she’s done with formal school (for now). Very proud to say that the program she’s been working with at FIU while studying has offered her a full time job starting in fall under their grant program! For any of those out there looking for jobs, recent grads and working under grants you know how hard it is to get into these positions so hats off to her. For working her butt off for not just a Bachelors but a Masters too, hats off to her times two! I truly don’t say it enough so proud you!!

-V

Ten Year LOVE LIFE <3

No one else would understand our relationship, and no one else in this world would understand me the way you do.  – Unknown

A lot of good love can happen in ten years. – Jim Carrey 

Growing up I always looked up to my grandparents, well more to my grandmother to be exact in relationships. She painted out this fairytale relationship that everyone should have. I thought that’s how all relationships were automatically. At that age I thought even she had one, which I later understood she didn’t. Well, not to outsiders, it was all a matter of perception. My grandfather was her first “love” (her at 16 – him already with a previous daughter) which nowadays would definitely even be questionable to most parents. To make a long story short they ended up having three more kids (my mom the baby) and you would never know my grandfathers first daughter was even from a first marriage because those ARE all my aunts, uncles, cousins, one big happy family and end of story.

In my family we’ve had all types of relationship examples from my grandparents which were extremely traditional marriages until death do us part on both sides which I think is just BEAUTIFUL. Down to Mom and Dad being amicably divorced before I was out of elementary school which has become somewhat normal nowadays. What I think hasn’t been AS normal is I feel they get along MORE now than they did when they were married. As a kid part of my nightly prayer routine was to make them stop fighting whatever it took, I guess it happened. Come college I found this guy, one that had been staring me in the face as a friend at work for years that I had never seen it, total friend zone. We sat in the same office, worked on the same projects, IMed constantly and even talked romantic advice about other guys… How naive and stupid could I have been!!! Wow. Looking back why and how did he wait. How amazing of a man to not walk and say ‘blind 19 yr old girl’ and patiently wait.

I’ve always been a strong believer in life, fate and it’s coincidental timing. Something crazy happened in the summer of 2004 that we decided to go past the friend zone. We weren’t quite ready to tell everyone; partially because we worked together and partially because we didn’t know where it was going and didn’t want everyone to get involved. By Mauricio’s bday in August we still were keeping it quiet which was strange because some of his friends are great with figuring things out (Alex) and others are very different than anything I had ever been used to (Hiram & Juan). In Nov my world came to a halt and I couldn’t be more grateful for Mauricio. My grandfather, the one that was always around to pick me up from school, basically that Cuban stay at home dad that everyone has, passed away. That’s when Mauricio and I officially “came out” to my family and friends. He became my rock. They were mourning as was I but I needed someone that was solid and wouldn’t fall apart on me outside the family. What was most consoling was that I had the peace of mind that my grandfather knew him and liked him before he passed. Very few weeks later the doctors told my grandmother that she needed open heart surgery immediately or she would only have months to live. Seeing as how her life long partner her just died she declined the surgery. The battles began. Her biggest excuse being that she didn’t have the proper care after the surgery. It’s at that point I decided that the chips were piled too much on the other side. I signed my transfer papers from UF to FIU after Spring 2005 and moved home. I talked to my boss to switch my schedule to become my grandmothers official caregiver from 5am-3pm daily then work 330pm-730pm. AND I officially got myself a BOYFRIEND!! It was so crazy to call him that by that then because it had become to effortless and been so nature that when we told people we actually had to go back an pick an anniversary based on dates we know we had actually gone on and done things so it is more than 10 years today!!! ❤️

Part of me thinks I wouldn’t have helped my grandma, stayed sane, made the move, finished school, or been the person I am today without him by my side. The other part of me KNOWS I wouldn’t have. Everyday I’m with him I can’t help but think that my grandparents were more right that when it’s the person they just fit, it’s right, it’s effortless, no rush and there’s no explanation needed.

I think we’ve been one of those lucky couples where we don’t have these huge blow out fights, say mean things that we know we’ll take back later, and etc. The first few years I thought it was just the honeymoon phase and eventually this would all come crashing down and reality would set in but nope.. all good on this front THANKFULLY! I can’t lie and say that are perfect, agree on everything, don’t have disagreements, don’t get on each other’s nerves at times, aren’t times where we wish we could take a silent break but those are VERY VERY few and far between and it just such a glimpse of those MAJORITY of times to realize how truly lucky I am.

Almost 5 years ago when I got the brain tumor news this guy was standing at my hospital bedside while I cried my eyes out. About 5 weeks ago after I had the stroke after brain surgery and couldn’t speak or communicate, was so frustrated all I could do was cry he was not even BY my bedside he was IN my bed while I cried my eyes out. He understood every thought. Basically every time I’ve given up and broken down to that “I have to be strong” front I put up he’s been with there, mostly because he pulls it out and knows it’s back there. He always knows how to be there, say the right thing, be there at the right time, give me the right look, and the right hug for just long enough to put me back together. He calms me.

At any time he could have walked. There was no commitment, there still isn’t. Not 10 years ago, not 5 years ago, not today; that’s always been very clear. I don’t own you. You stay as long as you are happy, in love and continue to be so, I think I learned that from the multiple style relationships I grew up with. I would rather someone that stay feel that way or feel forced to stay unhappy. You find another guy on the street and he might have walked out of that hospital night 5 years ago, let not even talk about all the craziness a few weeks ago. Not my guy, I can’t even say what THAT says.

“More Than Words”
Saying I love you

Is not the words I want to hear from you
It’s not that I want you
Not to say, but if you only knew
How easy it would be to show me how you feel
More than words is all you have to do to make it real
Then you wouldn’t have to say that you love me
Cos I’d already know

What would you do if my heart was torn in two
More than words to show you feel
That your love for me is real
What would you say if I took those words away
Then you couldn’t make things new
Just by saying I love you

More than words

Happy Anniversary. I can’t say it enough. I love you.

 Let’s celebrate our anniversary and raise a toast to our togetherness. Sweetheart, I cherish the memories that I share with you.

A Glimpse of Normal LIFE!

Albeit being posted a bit late so excited about it! Finally a weekend that felt somewhat like normalcy and luckily a long one!!

Friday: Kicking off with 4th of July! The yearly all day Biltmore outdoor plans were hesitantly cancelled because of the uncertain weather. The last thing any of us wanted was to be running through muddy puddles in the rain and sitting in traffic for no fireworks anyway (or a recap of last year). The day started fairly early at the mall with Mom (“The First Lady of Cutler Bay” as I like to refer to her lately) to find something for her to wear for the fireworks event that night. After amazing ourselves with the ease of parking AND finding a few outfit options we moved onto our next mall task. With Mauricio and I’s anniversary creeping up (TEN YEARS on Monday!!! Don’t worry a post will be coming up soon about it) and all the recent event’s taking up so much more time than I expected (stupid brain surgery and complications) I needed to pick up his gift! Luckily I had a short list and that was easy too! Mom dropped me off at Mauricio’s and she moved on for her First Lady duties. We (Honey and I) opted for a quiet dinner for two in the Gables (which was really empty and without a drop of rain oddly) and made for a lovely date night!

Saturday: The next morning started with a great diner breakfast with Dad and Nancy. One of those, take half home and still be full type of places, but it was great. Props to Nancy which will make her the permanent “picker of food places for the future”. Although it definitely required a nap and lazy few hours around the house instead of housework (partially because of how early we went not entirely how full we got)! The rest of the day was actually like a normal mall and errand weekend with Honey which hadn’t happened in so long. Must say it was nice to feel back into our pre-surgery routine 🙂

Sunday was another lazy day with Honey… I hadn’t realized how long it had been since I had enjoyed one of those. It was nice to just sit there and do nothing (by choice). No doctors, machines, nurses, not locked up in my own house. It felt like we were just hanging out and being US, not like he was my “chaperone” which was our latest term for someone being over or around me to watch that I was ok all the time. Not that I don’t understand the need or importance of that right now, it just a little old and irritating already. And sunday night became an old resumed traditional Sunday night with my Dad that we had not done in quite awhile, dinner with my dad and sisters. Imagine sitting at a restaurant with your Dad and siblings, EXACTLY, always eventful and you can never run far away or fast enough… eventually they become “memories”.

So after what seemed like riding the worlds longest roller coaster it seemed like it was finally coming to it’s final destination with a weekend of normalcy. It’s almost like you can hear that perfect announcer voice over the speaker telling you to “remain seated with all arms, feet and belongings in the carts until the ride employee assists you off. Please remember to exit to the right side of your cart and thank you for riding. We hope you have a great day!” Except this was waaaaaay more than a roller coaster and 30 seconds at an amusement park!

-V

Looking forward to life after seizures

Scariest day ever is officially here. Not sure how to feel sitting in the car on the way to surgery I can’t say it’s a feeling I have ever experienced. Deep down I know it has to happen, has been a long time coming, I am as prepared as I’ll ever be, I have an amazing medical team and support system in place and look forward to starting life after seizures. I just can’t shake this logical fear of walking into the unknown with a bagful (yes not a handful) of questions. I wish I had written more, I wish I had written it all down, I wish I had didn’t have to worry about writing anything. Then I realize I’m actually lucky it was me. I’m extremely emotional and would probably give a limb for anyone I love; definitely would not be ok sitting this out on the sidelines for someone else so I’m glad it was me not them. I’m glad I have been blessed with an amazing life, friends, family, and doctors. I’m ready.
-Vane

Friend for LIFE!

Memorial day week my entire life has had a standing appointment, one I wouldn’t change for anything. Growing up it did sometimes feel almost like a burden when my friends had fun plans for the long weekend and I couldn’t join. The older I got the more I realized that I was lucky to have this “burden”. Today is my big sisters birthday!!!! Today she is officially in her 30s. There is no more difference in age than any other year but now I can officially say she’s in her 30’s and I’m still in my 20s!!

When people meet us they’re always
shocked by the fact that were only 11 months apart. Irish twins I suppose? For us it just meant being dressed alike, called the wrong name, and sharing everything our entire childhood. Looking back now I realize that I have something special. Someone who knows every single crazy family story or inside joke not because I told it but because she was right there with me.

Even for those times we were apart I knew she was just a call away. I’ve had the honor and privilege to watch her graduate not just high school or college but also vet school. My live in pet doctor. I get to hear all her crazy stories about animal crisis’ what walks into be treated and saved. I have my sounding board of opinions and personal fashion consultant living right next door. Someone to stand by me and get lectured by my parents (even now). Someone to know what I’m thinking without needing any words (as proven by the fact that we not knowingly got each other the same exact birthday card this year!!)

While she may not be excited about the new decade change I am! It’s celebrating one more year of having my family partner in crime, tag team on my parents, Irish twin, school buddy, and forever friend. Happy birthday to the best (and coincidentally only) big sister!! Xoxo
-Vane

Life lines

Fear is false evidence appearing real.

You bring about what you think about.

I know them all, doesn’t everyone? I can recite them in my dreams. Especially in light of everything going on my inventory of positive catch phrases and motivational one-liners is overflowing. My pink bubble definitely helped build the stockpile before I really needed them. I’m thankful to my ‘blood running pink’ for so long, I can’t imagine trying to change my mentality in the midst of now, uncertain chaos.

-Vane