Inhale courage. Exhale fear.

The last 3 months have been quite the journey! As you know I have shared the major events with all of you that have gone on since I’ve found out about my brain tumor back in March. 

Today is a prime example of prayer’s being answered. ๐Ÿ™๐ŸผFor the last few month’s I have been wondering if I would be needing a second surgery or not. The last MRI that they took right after my surgery on 5/22/17 looked as if the tumor was not all taken out. It was assumed by the doctor’s that it was not a full resection.

“I know the craniotomy took a lot out of you Mrs. Vendetti (that still feels new to be called that lol) but just so you know a second surgery may be the best possible option” said one of the oncologists. She then explained all the risks of radiation and chemo to me along with all of the side effects. I remember going into a “trance” like state and the only thing I could think of was the fact that she had just said that “a second surgery may be the best option”.  The thought of going through another craniotomy was the scariest thing to me and I’ve been hoping and praying that I wouldn’t have to go through that for a second time just as I was starting to feel myself again! Of course if I had to do this again I would, but the thoughts in my head where an example of straight up FEAR.

“The last surgery went so well. Even with a leak going down my spine causing me severe pain and the inability to walk for a short period of time. How on earth would the second surgery go?”

“Would I be able to walk this time? Would I be paralyzed on one side of my body? Would I loose my smile?” 

The thoughts and the what if’s went on and on but I was determined to not let fear win.


The plan was then to wait it out and see what the next MRI showed and we would either go with a second surgery or go on with radiation/chemo to get rid of the rest of the tumor. All options SUCKED!

My last MRI was done on 8/22/17. My dad drove me into Boston Medical that day and I was so out of it because I had to take Benadryl ahead of time (lol). I had to take the Benadryl due to a small allergic reaction I had from the dye in one of my previous MRI’s.

There were two kind women who did my MRI. They were very nice and comforting. We got to talking and not one but BOTH of their husband’s have brain aneurisms that are being monitored by MRI’s closely. One of them was born with his and I believe only gets his MRI’s yearly now. (I truly believe you do meet everyone for a reason).

While being pushed into the MRI machine while feeling completely claustrophobic. I did not let FEAR takeover. I shut my eye’s and prayed to God the whole time I was in the machine. When I wasn’t praying to God I was praying to my Papa<3. While I wasn’t praying I was meditating. I was solely concentrating on my breathing. (inhaling courage and exhaling fear) Before I knew it, it was over and my Dad and I went to have dinner in Boston to avoid rush hour traffic. Any excuse for me to eat and I’ll use it lol!


My follow up was today 8/30/17. After my MRI I waited a few days and called my doctor to see if he could ease my mind a little with giving me some sort of results over the phone. I got a phone call back within the hour and he said “Danielle we are very please with your MRI. We see no trace of any remaining tumor.” I was in shock because I thought they were almost positive that they didn’t get it all out. We spoke a little bit more over the phone and I thanked him for calling me ahead of time because he could’ve made me wait until the 30th.

Today’s appointment I saw the results with my own eyes. I will be receiving MRI’s every 3 months at this time to be monitored. He explained to us today that there is no sign of the tumor but since the tumor was malignant (low grade glioma) we have to monitor and assume there are still cells left. I asked about chemo/radiation at this time and if they were needed or advised. He said no and IF the tumor grows back then they will go forth with treatments. Here is the picture that I have been praying for:


On the left is the MRI right after surgery on 5/22/17 and the right is 3 months later which was taken 8/22/17! I did have a hematoma after surgery which is a pool of blood between the brain and its outermost layering. This is fairly normal after the surgery I had but it has gone down significantly to the doctors surprise. He said it went down more then he thought it would’ve within the last 3 months and it must be my age on my side. (I’ll take it lol) 

This is it for now! I will keep my blog updated more then I have been! Thank you again for the continuous amount of support and prayers! It means the world to me!โค๏ธ

Xoxoxo,

DV๐Ÿ’•

 

Ease your mind.ย 

Hey guys! Haven’t posted in awhile because there really hasn’t been any major updates. The latest is that we are holding off on radiation at this time. The oncologist wants another MRI at 3 months post op. So sometime in August or September is when my next MRI will be. My last MRI which was done a few weeks after surgery had too much fluid and swelling to really be able to tell what was what. 

As for chemo I will find out more on Monday 7/17; as my two oncologist were going to put their heads together on what they should do in my particular case. Will update after that appointment.

Speaking of updates. This blog has been an outlet for me. It has helped me in many ways. It has been therapeutic to me and most importantly I hope it reaches someone googling late at night when they were just newly diagnosed and it eases their mind and gives them HOPE. I’m the biggest girlie girl WIMP when it comes to medical stuff and if I can get through this you can too. ๐Ÿ’ช๐Ÿป

This blog post is not a “pity party” or me trying to seek attention. It is to help people who have been diagnosed with a brain tumor or anything for that matter. As I was once that girl newly diagnosed with a brain tumor and was scared for my LIFE. I’m not that girl anymore. I have hope, faith and trust in myself, my doctors and God. This doesn’t mean I don’t have my down days because I certainly do. Their is a HUGE difference between being negative about your medical situation and being afraid. Without being afraid you cannot overcome your fears. At 2 months post op today I think I’ve conquered quite a few of my fears. ๐Ÿ‘๐Ÿผ

Social media is how this world communicates and operates these days. It’s OK to put your story out there. I remember when I was first diagnosed I came across a blog. I read this blog in ONE night. I was completely inspired and I belive she wrote “Share your story, you never know who you might inspire.” Well she inspired me and that’s why I’m writing this right now. (Thanks Meagan Doumont;her blog is attached in my women inspiring women post;read it!)

Going through something as serious as this you realize who is real and who isn’t. You learn to trust your intuition and gut- which you find out has been right all along! Let all the negativity go in your life, it’s not worth it. Trust me! 

Again brain surgery is no joke. Now I get why people say “it’s not like it’s brain surgery or anything” (I’ve gotten that a few too many times lol๐Ÿ˜‚) You need to heal physically as well as mentally. You were on the operating table wondering if you would live or if you would be the same when you woke up. 

  • Take care of yourself. 
  • You come first. Set boundaries…
  • Lean on your loved ones for support and don’t feel guilty about it.
  • Laugh. A best friend will usually make this happen ๐Ÿค—
  • Cry. Don’t hold it all in; vent about your fears and then move on in a positive direction.
  • Listen to your body when you need to rest. Lots of sleep and naps the first few months. (Now I have insomnia lol)
  • Stay as busy as you can because laying in bed all day thinking and googling will drive you nuts! 
  • Try to exercise a little bit each day; just don’t over do it! I’ve been trying to walk a mile each day and will continue to work my way up! Something is better than nothing!
  • Eat healthy! ๐Ÿฅ‘๐Ÿ‰๐Ÿ๐ŸŒ
  • Hydarate! This has always been a problem for me- working on my water intake! ๐Ÿ’ฆ๐Ÿ‹
  • Meditate๐Ÿ™๐Ÿผ If you haven’t tried this I highly suggest you do. It has helped me gain control of my own thoughts and has helped me so much with my anxiety. 
  • ReadThe best book I have read during all of this is “The Sun Still Shines” by Jodi Orgill Brown- anyone with a Brain tumor order this book it’s amazing. ๐Ÿ“š 
  • Pray. Everyday and every night.๐Ÿ’•

I’m going to end this blog post with some inspiration! My husband’s cousin Darryl just recently had emergency brain surgery. As Mark and I were leaving Boston Medical Center on July 3rd after my appointment with the radiation doctor I was processing all of the information that was discussed during the appointment. I was bit nervous that I still had remains of the tumor in my head and we were still waiting on treatment. My phone suddenly beeped while we were getting onto the highway with a Facebook message saying “from one brain patient to another. On my way home now.” ๐Ÿ’ช๐Ÿป Darryl thank you for this message as it showed me true strength and it made me feel like it was a sign to just breath and trust. 

Prayers for Darryl, his wife Michelle, and his whole family would be appreciated! He is doing great and has a positive attitude. Below is a post he put up on Facebook about what he’s going through! ๐Ÿ™๐Ÿผ


Thanks for reading, for the continuous support and the prayers! Please feel free to share this blog! Will be back with updates soon! 

Xoxo-

DV๐Ÿ’•

6 weeks post opp

Hi guys! Sorry I haven’t updated my blog in awhile. Been journaling and waiting to get more information from my doctors. 

So the doctors have to assume that not all of the tumor has been removed. This lead me to be referred by my neurosurgeon to two different oncologist’s one for chemo  and one for radiation. 

Had the appointment with the chemo doctor who is waiting on a test to determine how sensitive my tumor will be to chemotherapy. The test was to determine the IP/19Q results (tried googling it still don’t know ๐Ÿ’ฏ what it means lol). That doctor wanted me to meet with the radiation doctor so they can both determine what is best for me to do. 

That next appointment I have set is July 5th with the radiation doctor. I’ve already decided in my head that I want to do the treatment or treatment’s now. I don’t want to wait another 3 months as wait and watch was also mentioned. Eventually I will need the treatment or treatment’s (one or the other). I want to get back to “normal life”‘as soon as possible. 

The waiting is the worst part of this whole process. I think anyone that has been through something similar to this will understand and agree. I would rather jump in and get it done with than have to wait but I’ve always been like that anyways when it comes to anything….

When I found out at one of my last doctors’s appointments that the tumor was “assumed” not to be totally removed. FEAR set in. I went to the “dark place” in my head with negative thoughts taking over. 

Like the devil and angel atop opposite shoulders, one murmured messages of fear and defeat, the other whispered words of hope and perseverance.” – Jodi Orgill Brown, The Sun Still Shines 

Anyone that is going through this situation or something similar.Order this book, you won’t regret it. So far it is amazing and I can relate ๐Ÿ’ฏ. All of her thoughts were just like mine up to this point in her journey. Inspiring read!! I will cherish this book forever. ๐Ÿ’•๐Ÿ’ช๐Ÿป

I reached out to some of my closest friends through text and told them what was going on but I needed time and space to talk about it and have reality set in. I reached out to my FAVE nurse, Michelle after a few days of finding out the news. I spoke of her in my previous blog. โค๏ธ

Michelle’s sweet and comforting words back to me that night, made my head rest easy. In the message she mentioned his name again, Taylor Hartsfield. She told me to reach out to her when I was ready and she would give me his phone number. Michelle heard of Taylor through a mutual friend and was touched by his story and then she said she met me. Almost same situation: young, married with young children and both have positive attitudes. 

Michelle had sent me this link a few weeks, telling me that Taylor and I had very similar situations. I avoided watching it because imagining having an awake Craniotomy done gave me the chills. 

I finally watched the following link and immediately messaged Michelle and said give me his number! 

http://www.miamiherald.com/news/health-care/article153917444.html

Badass right!!!? I text Taylor that AM and we spoke on the phone that afternoon for about a half hour. We exchanged stories, I told him I was scared and emotional for just finding out that not all the tumor is out and I will need treatment. He went through the same and is currently going through treatment’s daily now. He gave me great advice, most importantly to stay positive! Glad I made a new friend, who can be a support system because NO one in the world will understand what you are going through unless they have been through it themselves. 

Anyways my energy is finally coming back slowly but surely! Been trying to stay busy and active this past week! As I have learned the hard way that staying in bed for days does not make you feel better๐Ÿ™…๐Ÿผ.Will keep you all posted!! Please feel free to share this blog with other’s!! Thank you!โค๏ธ

Xoxo, 

DV

It’s Ok not to be OK

So as some of you know I’m still in the hospital. Was admitted again on Friday due to serve pain in both my legs and hardly able to walk on both of my legs. No signs of blood clots. An MRI of my spine was done and nothing concerning there. They think fluid leaked down my spine though and that is causing the severe pain in my legs. Each day here the pain is getting better I’m able to walk on my own just did a lap around the floor all by myself lol.๐Ÿ‘๐Ÿผ Yesterday was a terrible day though. Pathology results. Something I haven’t tried to worry about until getting though this surgery. I was told in the early Am yesterday that a doc would be in to relay the information to me. Major fear set in and emotions. I legit had a panic attack when the doc walked in. Never had one of those before. The doctor said that it is a low grade glioma and it does have “the C word” cells in it. Before this we were unsure if it had cancerous cells in it or it. It is very slow growing and the tumor was about the size of a small starawberry ๐Ÿ“ they said… what the next Steps is for me to get an MRI on my Brian to make sure it was all taken out for sure and to see if any cells were left behind. Then I go ahead and meet with an oncologist and talk about the next steps. Radiation was mentioned, watch and wait method. It’s still early so I guess this is all I know for now. Just updating my blog to keep you all posted. 

 The doctors are telling me that is a good scenario for a bad situation which I am grateful for. But that doesn’t mean it still isn’t scary and life changing ordeal. It’s OK to break down and cry but try to overcome it you are stronger than you know. I honestly never thought I was this strong of a person. Guess i proved myself wrong๐Ÿ’ช๐Ÿป


Thanks everyone for everything, you know who you are love you all๐Ÿ’•๐Ÿ™๐Ÿผ

Xo DV 

FEARLESS.

Awareness is so important. It really is. Before all this, I had NO idea what symptoms brain tumors cause and how many different kinds that there are. I had no idea because I wasn’t aware. Why wasn’t I aware? Because I never thought it would happen to me…. 

Here I am though. The night before having brain surgery. This feels like a messed up dream but these are the cards I’ve been dealt and I must face them. I have been pretty calm for the most part as I’ve written in some previous posts but tonight not so much. My mind is racing and thoughts of the worst possible scenario is definitely there in the back of my mind. The emotions I’m feeling right now are real and raw. So real I don’t even know how to type them into words. All I know is that I have to do this. I actually called the hospital Thursday and talked with a nurse and told her I needed reassurance that I was in fact doing the right thing. She calmed me down and told me what I already knew, that this needed to be done. 

Facing your fears is probably the strongest thing you could ever possibly do for yourself in life. Not everyone’s fears are the same. Brain surgery seems like a pretty big one but not everyone has been dealt these cards and they may never have to deal with anything like this. In fact someone’s biggest fear could be a first date, public speaking, a job promotion or a test. Everyone of us will experience fears in this life but not everyone is dealt the same cards. Don’t compare your fears to someone else’s. What seems like a big deal to you will seem like a minor thing to someone else and that’s ok. We do not have to justify our fears we have to become FEARLESS and face them. 

So if your going in for brain surgery tomorrow (wink ๐Ÿ˜‰) or you have that big exam tomorrow- go in and give it all you’ve got. Be fearless which means being scared shitless and doing it anyway!!! 

As for brain tumor awareness. May is brain tumor awareness month. Go grey in May to support brain tumor research! I will have a whole blog dedicated to awareness coming up in the future! 

Appreciate all the support and prayers that have come my way so far! I can feel the love and thank you๐Ÿ˜˜
Xoxo, 
DV 

Calmnessย 

So on April 20th I had my FMRI done. It was pretty cool to say the least besides it being extremely loud. Glad they gave me ear plugs lol. What they did was have me play a few different types of “mind games”. In the MRI machine was a mirror that I could see the computer screen on. On that screen was the directions on what to do. When a yellow plus sign (+) came on the screen by itself I was supposed to think of nothing. This is extremely hard to do but since I’ve been practicing meditation and yoga on and off I have learned to just breath and not think of anything but to focus on my breathing (which is huge for me lol). Then they had letters pop up on the screen and you had to think of as many words that started with that letter in your head. For example “A”: Apple, avocado, asshole…LOL! You were not to say the words out loud (thank God), just think of them. This would show the doc how my brain functions when I think (fascinating). They also had a similar test which was fill in the blank for example: Little boo peep lost her __________. They then had sentences that were jumbled together which again when these appeared you were supposed to think of nothing. The whole time I was back there was about an hour and a half. The worst part of it again was the loud noise and not being able to move. 

Once it was over my doctors receptionist named Lorna, who is an absolute sweet heart, squeezed us in with my neurosurgeon. He was able to book us the surgery which is scheduled for May 12th. The surgery will be a craniotomy and I will be in the hospital around 5 days (2-3 in ICU) if all goes as planned. He informed me of the risks and told me he was going to have to shave part of my hair. I then started crying not because of my hair but because all of a sudden it felt real. “I’m actually doing this”, I thought. I have no choice really, it has to come out and I believe that I will feel better once this is all over. 

The past week and a half since then I have tried to keep as busy as I can. I have had good days and bad days. I noticed that I wasn’t focused on the surgery I was focused on minor/petty things that shouldn’t matter. Kind of like what I have been focusing on before I have found out this news. In times like these you see people’s true colors. You are reminded that you are right about some people and that you should always follow your intuition. Some people will never change and won’t like you no matter what. Their action’s show their character not yours. 

Anyways as I was saying I was so focused this week on trivial/petty things that I was driving myself nuts and my husband lol. Why was I more upset about some jerk’s then getting brain surgery done? Maybe I was distracting myself? Maybe it was a sign that all this energy going towards people and things that don’t matter was my main concern before this news came about. Maybe God is trying to teach me a lesson. Not to dwell on things and people. Move on and let things go. I truly believe that I was given this journey to teach me just that. 

Tomorrow is my pre op appointment already. Can’t believe it. May 12th will be here before I know it. When I think of the surgery taking place I have this weird calmness about it which is kind of freaking me out because I’m usually a spazz about medical stuff. I thought I was a badass for getting through 2 c-sections and some kidney stones; nevermind brain surgery! I believe it is God keeping me calm. I also see when I’m not calm about it how it effects everyone else around me. Staying strong is the best possible thing to do in a situation like this. Calmness is a super power! 
Xoxo, 

DV 

Support

Support from family, friends, coworker’s and even people you don’t even know is the best thing you could ever ask for going through something like this. I have spoken to people that I don’t even know that have been through similar situations and their support and encouragement mean the world to me. I don’t think you can prepare yourself for brain surgery but with support from others it certainly helps. The main support though needs to come from YOURSELF. Only you have control over your thoughts and actions. Keep your mind at ease. Distract yourself with what you love. Keep busy, get plenty of rest and no sulking! The last thing you want is a pity party lol! Trust me it will make you feel worse! Also keep negative people away from you! You know who’s in your corner and who isn’t! 

Work would be a great distraction for me right now too but unfortunately with my ongoing symptoms I’m unable to at this time and I miss my CDA friends. (Hi guys!) 

Next week I have another appointment and will hopefully have the functional MRI done on that same day. I had another episode the other night of intense numbness and tingling on the right side of my head going down into my face. It woke me up in my sleep. It was pretty scary. The doctors put me on an anti seizure medication since they think that I’m having small partial seizures and they don’t want the symptoms to worsen. Hoping to get a surgery date next week!

Here are some supportive and encouraging words from strangers that have turned into friends:

Thanks again everyone! 

Xoxo, 
-DV๐Ÿ’•