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 💯 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
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. ❤️
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!
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 better🙅🏼.Will keep you all posted!! Please feel free to share this blog with other’s!! Thank you!❤️
As a woman in the past I have found it difficult to find true supportive friends,family members, co-workers, or even acquaintances to trust and put my guard down with. Women often compete with each other which causes resentment. Which causes backstabbing. Which I believe comes from jealousy.
Jealously I’ve never really understood it. The definition of “jealous” is feeling or showing envy of someone or their achievements and advantages. I mean do I occasionally get jealous of someone who is laying in Bermuda on the beach in the sun and I’m working my ass off just to pay my bills, of course it’s only human nature but good for them, I think to myself. They deserve it. They’ve worked for it.
Do I get jealous of women who are beautiful and have everything going for them NO. I never have. I’m inspired and that is completely honest. I compliment other women I always have especially my beautiful inspiring friends👯. Do I gossip sometimes, um yeah who doesn’t lol. Women who see other women as “threat’s” per say and like to tear other’s down by making them look bad or incapable of handling their job,relationship or whatever it may be. To be honest I’ve been a victim of this a few times in a few different situations in the PAST. I often wonder why but I have now learned to take it as a compliment if others are trying to tear you down. 💁🏼🙋🏼 It must mean you have something going for you. 🤗
This blog post is a little off topic but I’m a firm believer in women inspiring other women and working together. 👭
Through this journey I’ve been through the last few months has made me realize how many inspiring women I have in my life, and when we support each other we can move mountains together💪🏻. I’ve known it before but even more so now.
This blog post is dedicated to you all. You all have inspired me to become a better person, to stick up for myself, to be STRONG, to be POSITIVE, to work harder, to have confidence in myself, to see the good in things, to laugh more, to cry when needed and to love each other. We are all different but we are all here to teach each other things in this life. I strongly believe that everyone we come across in this life is for a reason and they all teach us a lesson.
Here are some of the inspirational women that I am so lucky to have in my life!💕
Going to end this blog with that last quote. Let’s start building each other up more! Together as a team we can accomplish so much!
Also I have so many more inspiring women in my life and you know who you are. If I added everyone’s picture’s this blog would go on forever lol. Love you all and again the support has been amazing and thanks for the strength and inspiration 💪🏻🙏🏼 also all the nurses who took care of me at BMC truly meant the world to me shout out to Sheila, Katie, Brad and the nurse that touched my heart Michelle:
Shout out to all the men in my life too but this post isn’t about you guys. 😏You all will get a blog post of your own too you know who you are and I love ya!
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.👍🏼 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 🍓 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 wrong💪🏻
Thanks everyone for everything, you know who you are love you all💕🙏🏼
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 😉) 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 you😘
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!
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!
The feels were all sorts of REAL today, April 6th 2017. Woke up bright and early by my husband who I think was more anxious than I was. Got dressed, put on some makeup and we were off. Off to Marylous first obviously lol!
While on our way into Boston we were stuck in traffic for awhile and got there by 930am. With a pit stop somewhere in the middle for a bathroom break and a fight because Mark got me a vanilla sprinkled donought and I wanted chocolate lol. (Typical)
When the GPS stated that we were a mile to our destination the anxiety sunk in. My legs started shaking, heart raced and my thoughts were uncontrollable. Fear of the unknown was what scared me the most. Was this cancerous? Life threatening? What kind of tumor is this? All I could do was prepare myself for those answers and think of my family who I have worked so hard for. They are all I need in this life and I know that now.
As we walked from the parking garage in the rain to Boston medical center I felt I had no choice but to be strong. Where was crying hysterically with fear going to get me? It hasn’t gotten me anywhere before and it certainly won’t now. I have ZERO control over this situation. I realized I needed to accept that and leave this to the professional’s and God.
Sitting in the Neurosurgery waiting room with my husband I looked at my Pinterest and showed him a million pictures of puppies to ease my mind. LOL. There was a few patients in there with their babies. I talked “baby talk” to a few of them (I do that now that I’m a mom lol) and didn’t get much of a response from one set of parents. They seemed very concerned and upset. The baby didn’t have a care in the world with her pink UGG boots and matching headband. She was all smiles. It was then that I realized that they were there in the neurosurgery office for their baby girl. My heart literally sank. I looked over and Mark and he said “I know” and put his head down.
After about 15 minutes the nurse came out and called my name. “Here we go”, I thought. The nurse was as sweet as ever weighed me (lost 4 pounds lol!) and took my vitals. She then walked me into the room and told me the doctor would be with me shortly. We were probably waiting for about 10 minutes in the room it felt like forever. The student intern came in first. He asked me a series of questions and did a neurological exam. He was a sweetie. Then the doctor came in. I’ve done my research on him and already knew his credentials and background (creepy, I think not). He was very nice and had a British accent…which made me like him even more. My husband said my eyes lit up when he said hello. (LOL!)
The Doctor again asked me what was going on and I told him. I found it hard describe my symptoms and to answer his questions accurately because honestly up until March 26th I wasn’t keeping track of my symptoms per say. I was just going with the motions and trying to fight though. He kept asking me questions and I interrupted him and asked “what kind of tumor do I have?”. He kindly said that we would get to that in a moment. He believes that I am having small seizures due to the tumor and where it’s located.
He then told me as he pulled up my MRI that I have a low grade glioma tumor. He showed me it on the MRI and the tumor on my right frontal lobe. You could see it and the difference from the left side. I asked him if it was cancerous and he said all signs point to no but he cannot say for sure until they biopsy it. The dye during then MRI didn’t take to it so he said that was a good sign. The doctor then looked at my husband and I and asked us “since this tumor is causing you symptoms, what are we going to do about it?” I told him we were going to take it out and he nodded his head in agreement. He explained to me that if the tumor was not causing any symptoms then he would “watch”‘ it. But that’s not the case and I want this thing OUT.
Next step is to have a functional MRI done and then we can schedule the surgery. Am I scared? Yes, but I want to get this done and over with so I can move on with my life. Thanks again to everyone for the positive vibes, prayers and well wishes. I’m overwhelmed with love and support from people. It means so much to me!