Wednesday, September 30, 2009

FINALLY! A TRULY GLORIOUS DAY!

Well I got the results from my 3rd MRI today and guess what, it's all clear. My neurosurgeon told me that I can go back to work. You couldn't break the smile off of my face. For the first time since 6/15/09, I feel a sense of normalcy and relief like I haven't known in a long time. My neuro wants to see me again in November to set up some scans so that he can send away for the plate that is going to be placed in my head. The plate will be made custom and they will be able to do that by the scans of my head. My 3rd and final surgery will be mid January 2010. I'm so happy!

Tuesday, September 29, 2009

Tightness in Chest

Ever since my 3 week round of being blasted with antibiotics I have dealt with tightness in my chest. My upper chest cavity feels tight inside and it is stressing me out terribly. There is no pain, just tightness. Tonight it is particularly prevalent. I tried taking an antacid to see if the culprit isn't indigestion. I hope this gradually fades away. I don't want to have to go to another doctor for another problem.

3rd MRI Results

Well here I was all excited and anxious to meet with my neurosurgeon today to read me the results of my 3RD MRI to no avail, he wasn't in today. So now I have to wait another day to see what my future holds. No big deal....yaaaaa right! I threw a fit when I got to the docs office and the receptionist told me he wasn't there. So my appt. is scheduled for tomorrow at 12:30pm. I swear I am going to check myself in soon.

Sunday, September 27, 2009

Forgotten Stitch


I found another forgotten stitch in my scalp today. I thought to myself WONDERUL! It was towards the front of my head. I was able to pull it out easily. It came out clean for the most part. The only reason I found it was because it felt irritated there. It was in there for a total of 31 days. It should have been removed on 9/11/09 with the rest of the stitches, 15 days after my surgery. Instead it was left in my head for 16 days longer than it was supposed to be. It stresses me out because here I am trying tooth and nail to avoid infection. Well it is in God's hands anyway and always will be.

10/4/09 - Found yet another stitch in my scalp which I removed without a problem.

Peace will Come Again

Last night I started to get a headache and my imagination started to get the best of me. I thought to myself, "Why am I getting a headache? Is my head bursting at the seems with pus?" My biggest fear is that I fall asleep forever without even having a chance to say goodbye. These are some of the crippling thoughts that come with this reality. I start sweating with anxiety, I am in a dark hole. Somehow God manages to put my mind in a better place. God is always there for me. I am able to make it back to positive land. God is healing me. God is protecting me. I believe in miracles. My body is strong. I will have peace once again in this life.

Had Another Great Day

Yesterday was another great day. I was able to take Coco for a walk and go to 3 different stores. I did have some shortness of breath from 3 to 9, I think I must be sensitive to sugar/chocolate because my breathing was free and clear up until I ate 1/2 a twix candy bar. Next thing you know I have shortness of breath for 6 hours. That really sucked. It was a great day anyway. I was very encouraged at how much I was able to do.

Saturday, September 26, 2009

Another Trip to the ER - Cefepime Blocking Anti-Seizure Med

9.14.09 Numbing and Tingling on the entire right side of my body, dizziness.

9/16/09 Numbing and tingling, diziness, muscle spasms, lips going numb. I call my doctor and asked if I should go to the ER or sweat it out. He told me go to the ER because he didn't want me to have a grand mal seizure which may or may not follow a Simple Partial Seizure. So I called 911. In the ER they told me I was having Simple Partial Seizures AKA Jacksonian Seizures and they upped my dose of Antiseizure medication. They wrote me a script to get an EEG. I was discharged from the ER and was back at Bizzy's by midnight.

Infectious Disease Dr. Appt.

9/10/09 - I started getting ringing in my ears and suspected it was the vanco. The Cefepime gave me constant diarrhea. My anti-seizure medication would pass right through me into the toilet. This wasn't good. So I saw my Infectious Disease doctor and told her that I could tolerate the diarrhea but not the ringing in my ears and possible hearing loss. So she told me to continue with the Cefepime and DC the vanco. She then prescribed me with Zyvox - another hardcore antibiotic that is taken orally at least. However I would get a nasty side effect from the Zyvox and that was shortness of breath and racing heart rate. I wouldn't be able to breathe freely for at least 8 hours at a time. It is a terrible and scary feeling not being able breathe. I would only be able to finish half the prescribed dose. I had to DC the Zyvox after three days. I was only able to tolerate the Cefepime and that gave me "the runs" 24/7. As a result I started getting seizures which eventually would land me once again in the ER.

Switching Antibiotics at the ER

9.5.09 In the ER they consulted with my doctors and decided to try me on Cefepime and Vancomycin. Both were administered through my PICC line. I did fine with the Cefepime and then had a problem with the Vancomycin. The Vancomycin was a 2 hour infusion. Towards the end of the infusion I felt my scalp suddenly start to itch. Then my face and neck turned tomato red and my blood pressure and temperature rose to 99.3. I was having a reaction known as "Red Mans Syndrome". I was given two Benadryl's and admitted to the hospital yet again. I was on a schedule of the Vanco every 12 hours and the cefepime every 8 hours. They monitored me in the hospital while continuing to give me both antibiotics and of course benadryl before my Vanco infusion. It was agreed that I was tolerating the Vanco well enough with the benadryl. So I was discharged on Labor day and went back to my sisters with instructions to continue the antibiotics.

The Antibiotics

8.29.09 The antibiotics were very trying for me. They were completely incapacitating. While I was still in the hospital they administered Tygocil - a super strong antibiotic that is so strong it has to administered via IV only. The Tygocil made me so nauseous that I could do nothing but remain in the fetal position with a ball of bile in my chest just waiting to come out of my mouth. Of course just having had brain surgery, throwing up was not an option. I asked the doctors, "What is this poison you injected into me?" It was 24 hour nausea. They offered me anti-nausea medication like Zofran and Reglan to no avail. I was so nauseous that I couldn't even eat, just couldnt get anything down, couldn't brush my teeth, couldnt bathe myself.

9.2.09 My PICC line was installed in the hospital that day. It was NOT a pleasant experience. This was so when I was sent home I could continue to administer the Tygocil through my PICC line intravenously. The next day I would be discharged.

9.3.09 I went home. The ride home was awful. I turned green on the way home. Still so nauseous from the Tygocil. They had the antibiotic delivered to my house and an IV pole along with saline and heparin syringes so I could administer the tygocil myself. My fiancé Maurice helped me with this. I stayed at my sister Bizzy's house because it was closer to the hospital and someone would always be home with me. The nausea never improved and I wasn't able to do ANYTHING. I knew I couldn't keep going on like that. It was counter productive to my recovery not to be eating, not to be moving around. It was a Saturday and I ended up having to go to the ER to get my antibiotics switched.

2nd Craniotomy

8.28.09 This surgery was much shorter and much less invasive. They washed-out all the pus and took many cultures. After the surgery I was rolled to my room in NICU. There I was quite comfortable until they decided for some INSANE reason to stop giving me morphine, put me on Tylenol with Codeine, and move me a step down to another area in the hospital, all less than 24 hours from surgery. This sucked! Without the morphine my pain was so intolerable that I could only cry. To top it off I had incredible nausea. Everytime the nurses came in I would ask them for Morphine and they would say, "the doctor has changed the orders to tylenol with codeine, sorry." I was glad when my BFF Barbara showed up because she threw a fit when she saw me in that condition. She demanded the nurses contact my doctor and have him order morphine for me. Thats exactly what they did. I was ultimately given morphine and immediately felt relief. I was so exhausted from the pain, tears and grief that I fell asleep. I can't tell you how relieved I was. Bottom line, the doc took me off of the morphine way too soon. It is good to have an advocate in the hospital.

No infections grew on the cultures so that was good as MRSA was a suspect culprit. They decided to blast me with antibiotics anyway just to be extra cautious and it would be for a duration of 3 weeks.

Friday, September 25, 2009

2nd MRI

8.25.09 I took the results of the 2nd mri to my neurosurgeon that day. I was hoping to hear, "looks good, your free to drive and go back to work". But no, it wasn't to be.....yet. He said, "We're going to have to go back in and do a wash-out because there is pus in there". "We're also going to have to take that bone plate out leaving you with nothing until December when we do the 3rd surgery to put a plastic plate in its place". This is not verbatum, but you get the jist. So now I am walking around with a soft spot on my head and have to be very careful.

Needless to say I was devastated yet again. 2nd surgery was scheduled for 8/28/09.

Happy Day

I am having a great day today. I cherish it, every moment of sunshine and happiness. Oh I love it. I took my dog for a walk today. I was nervous as hell, but it felt good to get out there and do it. Walk in the sunshine! I was so thankful to God for giving me that gift!

Trip to the ER

8.18.09 I go to the ER because my legs are numb for 6 hours straight. Turns out it was just seizures. My anti-seizure med isn't working properly. I switch from Dilantin to KeppraXR. It works better for me. Yes this was terrifying, yes it was awful.

Emotion

Elmers Glue White Pus Gushing from Incision

8/20/09 The day after I saw the doctor I wake up in the morning. I bend over to let my dog outside and I hear what I believe is a buzzing on my head. It startled me. I ran into the house to see if there was a bug on my head. But no, it was worse, it was a thick white pus that was erupting from my scalp. It was like Elmers Glue. It kept spurting out like a volcano! I almost fainted. With each gush it made a buzzing sound. It did this for 24 hours. In the end my neurosurgeon called it a sterile abcess. My cousin Patti came over with Bizzy and the Baby. We were trying to have a conversation but my gusher kept buzzing like a kazoo. I felt like a whale with a blow hole! video

Scalp Incision Infection


8/19/09 I notice yellow pus on my incision. Looks infected. I go to my dr to have him look at it. He doesn't seem concerned. In fact he said, "I'm not impressed". He prescribed me Augmentin (antibiotics). That was the end of it or so I thought.

Just Another Fright Night

I had a big day yesterday. What was big for me. My sister Aimee took me for my MRI and then I went to the grocery store and CVS. That was a lot for me. At one point I had to sit down and breathe. I am so out of shape that I lose my breath going up stairs or walking around for too long. I havent been able to consistently exercises since 6/15/09. It is amazing how fast you can lose your fitness.

Well I dont know if it was the day or what. But I didn't feel well last night. I had a pressure in my head. My brain just wanted to rest. My head felt slightly numb and tingling. I decided to up my dose of KeppraXR from 1000mg/day to 1250mg/day; since I was still getting simple partial seizures a couple times a week. I tried to fall asleep at 10pm last night. But everytime I closed my eyes I could see a freight train of thoughts passing through my eyelids at 100 miles an hour. I would get vertigo. I got nausea again and my limbs felt crazy, i just cant describe it, like they were unpredictable. So I turned on the TV and watched what i think is called "the late show" with Conan O'Brian. I took a zofran for nausea and drank a lot of water. I knew eventually the seizures would subside. Well they subsided enough around 1am. So I was able to fall asleep finally.

This whole thing is a nightmare. I've got to get and EEG and get these seizures sorted out so I can get on with my life! There is so much going on....Im just overwhelmed. But im gonna do it because thats all there is to do.

Thursday, September 24, 2009

Alone

I cant stand being alone. Before all this I used to relish it. But now it is plain terrifying. I find great solace in the company of others. I find that when I am alone I am prone to obsessing about my problems. My friends and family are a huge part of why I am going to survive this. I am so greatful for all the wonderful people in my life. Right now I am alone and terrified, alone with my thoughts. I guess it is just the day, having had the MRI today. Not being able to read the radiologists face. They are sworn to secrecy. Today, right now in this moment, I am in a bad place. I want to cry. I am crying. I feel overwhelmed. Not the first time, wont be the last. My friend Barbara should be here soon. I know I will feel a lot better when she gets here. Cant wait for life to get a little better.

3rd MRI

Well today I had my MRI. I am so anxious about it. Although I have had this gut feeling all along that this is going to come out clear, I am still stressing about it. Today is Thursday. My appointment to see my neurosurgeon isn't until Tuesday! Ahhhhhhhhhhhhhhhhh! I guess I am just going to have to sweat it out. I am just so scared right now. My future depends on the results of this MRI. Well, mind over matter right? I have a choice to let fear overcome me or I can muster up all the strength I have and choose the positive/optimistic route. Easier said than done. I am going to lay down and listen to the positive thinking CD that my cousin Kathy gave to me. Right now it is the only thing keeping me sane.

A Very Bad Day

8/2/09 - This day I felt dizzy, my legs were getting electric pulses through them and felt like they didn't want to work. Then I had a piercing headache that was focused on one spot of my head. I was nauseous. I came very close to going to the ER. I didn't. I just cried and prayed to God. The thoughts that went through my mind that day were:
- Is it a brain hemorrhage?
- Are my legs ever going to be normal again? Will I be able to walk?
- Am I going to close my eyes and never wake up again?
- What is going on in there?

I thought to myself, "I am going to miss my family so much if I go".

An Attempt to Switch Anti-Seizure Meds

7/10/2009 - My neurologist suggested that I switch from Dilantin to Lamictal. I took my first dose of Lamictal. 2 hours later my vision blurred and my heart raced. Again, terror gripped me, I was home alone and didn't know what to do. I called my neurologist and he told me to discontinue the Lamictal and stick to the Dilantin. I sweated out the side effects of the blurred vision and heart racing just praying to God to take care of me. Eventually the side effects would subside.

The Homecoming

6/26/09 It was great to be home and out of the hospital. However the day after I arrived home the right side of my body went numb, yet I still could move my right side. It was terrifying. I didn't know if there was a problem with my brain surgery, if it was a complication or what. Turns out it is what I believe to be Simple Partial Seizures aka Jacksonian Seizures. Now that I am almost a veteran on the subject, it just would have been nice if the docs would have given me a heads up on what to expect after brain surgery. It was simply terrifying. I didn't know if I was going to die or if I should go to the ER. I just didn't know and that wreaked havoc on Maurice and I. It is what would be the 1st of many successful attempts at what I like to refer to as "brain terrorism". Never in my life did I have to deal with seizures and anti-seizure medication. Little did I know that the anti-seizure med that I was on was not working for me.* Ignorance wreaks havoc on lives.

*Anyone who has brain surgery is put on anti-seizure medication. It may be temporary or the rest of your life. It all depends.

Wednesday, September 23, 2009

Break Down

Today I had a break down. I have been waiting and waiting, anticipating my MRI that is scheduled for tomorrow. God help me if it does not come out clear this time. I don't know what I am going to do if it does not. I have been through 2 brain surgeries already. I am tired, worn down and fed up. I have been through so much that I don't even know how I have endured this brain terrorism. I have had enough.

The Recovery Begins

6/18/09 I was in NICU longer than anticipated as there were issues with my blood pressure; it was too low to get blood to my brain. There were a few times when my family would be visiting with me and I would say to them, "My blood pressure is dropping". Next thing you know my eyes roll back into my head and my lips turn white. Ultimately I needed a blood transfusion. After that my pressure improved and the problem was resolved. I have always had naturally low blood pressure as I worked out and did cardio most days of the week. I miss working out and doing cardio all the time. I am determined to get back to that in due time. Eventually I would be discharged from the hospital on 6/26/09.

Yet Another Fright Night

Last night around 7pm my nose went numb then the right side of my face, then my right foot. It didn't subside until about 10pm. My left knee was aching. I woke up in the middle of the night with knee pain. It felt like it was swollen. What the heck is going on? I feel overwhelmed and terrified. My imagination is going wild with frightening ideas of what it could be, is it my brain, or did I simply sprain my knees somehow? As bad as my imagination gets, I counter it with good thoughts. I tell myself, "God is protecting and healing me". Then I imagine myself fully recovered, working again, driving again, in the gym again, doing cardio again. There is always that nasty little thought in the back of my head that fears never being able to do those things again. But I squash it with great effort and optimism. I hope to have a great day today and remain calm, centered and focused no matter what occurs.

Tuesday, September 22, 2009

The Surgery

6/17/09 I was transferred to a hospital that does neurosurgery. Upon arriving I met with my neurosurgeon who greeted me and just plain had the best bedside manner. He confirmed with me that my Meningioma was benign and that I would fully recover. Ah if only it were that easy. It was a five hour craniotomy. The tumor was removed in 3 parts. The surgery went well. After the surgery I was rolled back to my room in NICU. Everything was a fog. I remember seeing 3 blurry faces. The nurse said, "Do you know who these people are?" and I said "Yes, that's Bizzy, Aimée and Maurice". Then I started to cry and my sisters asked me why I was crying and I said "Myyyyyy Haiiiiiirrrrrrrr". LOL. I was so out of it and on morphine. Then I fell in to an exhausted, healing sleep. My family stuck around and talked, played UNO while I rested in the bed. It was a great comfort to have them there and listen to them while I rested. Then they left and I continued to sleep. The next day I woke up and managed to text message my BFF Barbara. She almost spit out her coffee when she received my text message. lol.

The Perilous Journey Begins


6/15/09 Healthy as a horse all my life until I turned 34. That's when my life would change forever. I was putting clothes away at 10pm on a Monday night when suddenly my right leg stopped working. It became numb and tingling, then my right torso went numb, then my right arm and then I couldn't talk. By the time I was in the ambulance everything had restored itself. In the ER after a CT scan I was diagnosed with a Meningioma (a type of brain tumor) the size of a baseball or maybe a softball. The ER doctor walked up to me and said Maria you have a brain tumor and need emergency brain surgery. I asked the Dr. if I was going to die and his response was "I don't know, It's anyone's guess". Well that put me into throws. What a jerk! He could have said "I am no expert, it could be benign or malignant, we shall see". I mean he could have handled that a lot better! I was in shock. It just cant be put into words what I felt in those moments. I can tell you that I was praying that it was all just a terrible nightmare and that I would wake up from it any minute; but it was happening, it was reality; and I had to deal with it.