One year later! How LIFEtime flies…

May29

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!

May29

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.

Sep29

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!!!

Sep2

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.

Forcing a LIFE reboot: Brain & Body

Jun20

Today is officially 3 weeks after my brain surgery, an awake craniotomy, to be exact, done on 05/29/2014 at Baptist Hospital in Miami. The neurologist told me after the latest hospital admission that “this is a marathon not a sprint” so I think the most appropriate and emotionally healing thing today would be to put down here and as much as I can to celebrate up to Day 21; the baby steps and the huge improvements that I or anyone have experienced and never expected. And thank everyone for every happy thought, good wishes, prayers, blessings, dinner, visit, phone call, text message, hard work, good juju, vibes and everything else out there!

**As a disclaimer below, you will read about speech and communication loss after surgery which I have literally regained in the past few days so in advance I apologize for any confusing parts.**

Last thing I clearly remember as close to the start from the morning of surgery is being rolled into the operating room around 9am with a few IVs in place, hospital gown on, nurses/anesthesiologists around, tons of machines, and VERY bright lights! I must say that the anesthesiologist did an absolutely AMAZING job putting me out because I would’ve imagined some pain by getting my head cracked open, my brain being played with then being awakened for surgery. but by the time I was brought out for the beginning of the awake part of the tumor removal I didn’t feel anything! I didn’t feel groggy or like I was drugged (even though I’m sure everyone in the O.R. would disagree). I didn’t have my glasses or contacts on so everything was blurry (because I’m normally blind without them) but the staff was pretty accommodating. They had me (1) reading sentences, (2) words off papers, (3) defining them, (4) saying synonyms/acronyms, (5) using them in sentences (6) answering random questions and even (7) singing songs which was all pretty interesting and distracting with the amount of noise and movement going on in the room. They did keep checking on comfort and pain which I was surprised wasn’t anywhere near what I expected it to be for having my head and brain sitting out there. I totally ended losing track of time and had a minor freak out when the neurosurgeon came around to talk to me for an update. I guess I was surprised to see in front of me instead of behind my head working even if it was for an update.

After the surgery I do remember going to the recovery/post op room and feeling ok with a slight headache (as imagined) but actually not as bad as I was expecting. I also was worried I would be bandaged and look like a swollen monster and amazingly didn’t so materialistically it seemed ok. That along with the news that 65% of the tumor had come out was pretty much successful to me. Obviously higher than 65% would have been ideal but something is better than nothing and good news is ALWAYS better than bad news. #1 I had made through the surgery.

I got admitted up to a room on the neuroscience floor and was actually impressed that I could write. Not the best handwriting, spelling or coherent sentences but pretty good for such a recent brain surgery (in my opinion) so I wrote my questions for the Neurosurgeon. Luckily he came by very soon after I finished them — one of them which was “should my fingers get tingly when the steroid get injected (goes away in a few minutes on the right hand)?” and another “is studdering and struggling to find words normal? It feels my thought & words disconnect when trying to explain things. Right now very rarely. feels like more common after steroids” because just minutes after he had left my room I ended up having a major seizure. He had just walked out of my room and my mom was able to grab him outside the door while I was seizing, he rushed back in to hold me while they medicated me to stop it and keep me from hurting myself. It was the first seizure I had EVER had completely awake so it was pretty terrifying. To this day I have no idea how it even effects the actual surgery/delicate brain that been so recently operated.

Dates and time did get VERY fuzzy after that so I’ll just list the major speed bumps (that I can remember) for now then come back with details once I get better timelines from my caregivers, “nurses”, family and loved ones who have been awesome of being my brains, eyes, ears, memories and chaperones the whole time.

Ended up having two different hospitalizations (05/29/14-06/03/14 and 06/05/14-06/10/14)

– Brain Surgery

– Stroke

– Brain Bleed

– Loss of Speech/Understanding/Writing/Communication

– Loss/Weakness of Right Arm/Hand/Face

– Anxiety Attacks

I’m very glad to say, and really have ZERO explanation about how, I am now speaking, understanding, writing and right hand/face/side is working. Every time I asked the doctors or therapists or looked online I found different ranges but all pretty much said between 4-12 months of recovery depending on the reason and gravity of the loss so regaining the ability this quickly was definitely not a thought in my immediate mind. I know it sounds strange but I don’t even have the words to explain how happy I am to just have words period! It was THE most frustrating thing I have ever experienced. At first I couldn’t understand ANYTHING. Whatever people said didn’t even sound like words, they were just noises, then they became words but I couldn’t connect them to what the words meant, then I made the connections for very short sentences and in my head could make full responses but what came out of my mouth didn’t match my brain was forming. Eventually I realized this and just shut up. I knew the sounds I was making weren’t what I should/wanted to say and I just didn’t know how, my writing and spelling wasn’t either so basically I couldn’t communicate without getting exhausted. I resorted to crying. I don’t even want to know how many boxes of tissues I went through. Once the hospital started sending speech therapists they started teaching me how to read and pronounce words again which helped quite a bit, for reading and if I knew how to spell a word then I could write it and pronounce it using their technique but it was exhausting too. Little by little I did start to see progress with the homework but the daily life still didn’t feel like it was going very far, that’s where my family and friends helped. All of a sudden that just started working and I couldn’t be happier. Not going to lie, it’s not 100% and it still has it’s glitches but a big leg up and enough that I can work from there a lot more.

I’ve started taking piano lessons after 10+ years which is very exciting and therapeutic.

I don’t think I (or anyone for that matter) would go into something like brain surgery completely ready. I don’t think I came out 100% right but I think I’m finally understanding what the neurologist meant when he said “this is a marathon not a sprint” and I know it’s hard and against my nature but I need to find a way to do it, to make it work… there is no other option for the best results.

-V

Life with doctors

May28

After that first seizure I dove into research and all the information doctors would give me. I landed an AMAZING team of doctors during my ER visit who are still with me today. I also received so many wonderful recommendations, second opinions and new referrals. Looking back I probably overdid it but regardless it was definitely a learning experience. Here are a few of those that have been seen along the way and my personal recommendations (in no particular order):

– Dr.Sergio Jaramillo (Neurologist at Baptist Hospital and Neuroscience Consultants Care Center I- Office 305-596-2080)

This guy has been a ROCK! Total superstar and wouldn’t change him for the world. Was assigned him in ER at seizure #1, was terrified by how young he looked (still impressed with how young he is) but definitely a perk. In addition to normal neuro appts, I’ve had 2 (or is it 3??) spinal tap/lumbar punctures done by him personally and would do it again. He is so personable, attentive, thorough and HONEST! His office staff is great, his assistant is AMAZING! I ended up taking my grandmother to see him when she started mentally declining and it was such a relief. Truly one of the greats.

– Dr.Vitaly Siomin (Neurosurgeon at Baptist Hospital – Office 305-271-6159)

There is something SO endearing about this man. He was assigned to me in ER at seizure #1, one of the newer surgeons at Baptist back then. Can’t say I have heard one negative thing about him through everyone I’ve seen. You can tell he absolutely loves what he does. He’s like an open book and feeds my inner need for more information. He has always been so amazingly patient, thorough, kind and understanding through my never ending questions. Deep down he has always been a supporter of learning and understanding what I am dealing with, wants me to see the MRI images and understand his suggestions. I do have to say I’m extremely addicted to the chocolate croissants at the Au Bon Pain cafe in the lobby of his building.

– Dr.Roberto Hero (Neurosurgeon at UM Miller school of Medicine/Jackson – Office 305-243-3245)

Managed to get an appointment with this rock star just a few days after seizure #1 through my boyfriends best friend (still owe him for that). He is definitely a wanted man. His resume and experience is just shocking and beyond words. I’ve definitely ridden a roller coaster of emotions with him. Every time I go see him I feel like I’m talking to my grandfather. Definitely a commanding presence and endless fountain of knowledge and experience. His clinic hours get very busy so I recommend taking the first appointment in the morning to beat the rush. There’s a cafeteria across the hall while you wait.

– Dr. Jacques Morcos (Neurosurgeon at UM/Jackson- Office 305-243-6190)

Recently saw him as a referral from a friend of a friend (who also happens to be a surgeon). WOW. This man was impressive. SOOOO detail oriented and has this very calm way about him. Amazing that with all the patients he had to see made me feel like the only one there. He was extremely honest and real with all the information provided. I do wish I would have met him before, not that I think it would’ve changed the outcome or team but possibly the amount of information through this point.

– Dr.Aizik Wolf (Saw at Doctor’s Hospital but recent conversations have told me he’s now at Larkin Hospital)

This guy is by far THE GAMMA KNIFE GUY. If you are not ready for intense discussions and decisions to be made, the quit while you’re ahead.

– Dr.Ronald Benveniste (Neuro-Oncologist at UM/Miller school of Medicine – Office 305-243-6946)

Referred twice by Dr.Heros for a stereotactic needle biopsy (which we declined). Very knowledgeable and patient (considering my declination and outward disapproval of his suggestions for MY case).

– Dr.Allan Jorge (Neurosurgeon at Consultants in Neurological Surgery – Office 786-517-8650)

Referred by my boss to assist in navigating the doctor path right after seizure #1. He focuses on spine so was not really an option for MY case but he was great in figuring out the politics, questions to ask and next steps when I was so overwhelmed.

– Dr. Milton Gaviria (Infectious Disease Physician – Office 305-595-4590)

Seen at the ER and follow up at his office after seizure #1. Due to the nature of the first seizure and lack of witnesses we ended up with a full workup of diseases to rule out (or in) possible diagnosis. Everything came back all clear so not much follow up continued with his office. Very polite and proper.

– Dr.Ann MacIntyre (Infectious Disease at Mercy Hospital – Office 305-858-6365)

Referred by my boyfriend who actually went to school with her brother and grew up knowing their family. She was adorable! Definitely not what I would expect from an infectious disease doctor (if you expect anything in particular). Was so attentive and personable. Did not hold back on doing everything possible to get a diagnosis or all clear. Literally wrote up a script for EVERY SINGLE test on the Quest Diagnostic check list PLUS an additional Rx. Was extremely thorough with results and explanations. Again, everything came back clear so not must follow up continued.

– Dr.Allan Friedman (Neurosurgeon at Duke – Office 919-681-6421)

Referred by multiple sources, one of which is a former patient who is doing AMAZING post-op. Yet another impressive resume and experienced surgeon. Did not actually see him or even get to making an appointment as I was happy with my medical team and already decided to move forward locally.

The list really does go on longer but these were pretty much the big players. I’m an open book if anyone needs more specifics, questions or referral information.