2012 I think its time to move on

This whole blogging thing got put in the burner once school got out of control sorry guys!

January 2012 brought a lot of "poor me" to the table. I counted on my friends, family and angioma alliance family the most and completely lost control of myself emotionally and physically. I mended a relationship with my mother after finding out I have the same type of brain tumors.
 My whole 2012 has been focused on the pain and truth about my genes and forsure learned how to deal with my new reality. My migraines have diminished a ton and I don't feel as physically or emotionally drained all the time. In 2013 I will continue to heal but not so much feel like I can't function on my own. I will continue to bang my brain in biology books for this last semester before I can apply to nursing school. I will take better care of my family and bestfriend-boyfriend, who has done such a great job of keeping me alive in 2012. I will be thankful for everyone and everything God has given me and try not to take advanatge of any opportunity I am given.
We got a second chance to be our little family when the surgeons saved our doggy. Me and Mike realized how much we both depend on our puppy for love and attention as much as he depends on love from us.

 Never say never and remember money comes and goes your family and friends don't :)

Love me and have a happy 2013

Day 2

I don't want to say anything too soon about the outcome of my shots since I've only had it done on one side and it has only been 2 days. However, although I have been very tired the last week I have not had a migraine since the wee hours of Saturday morning. My head was a little achy when I stayed in bed too long this morning but otherwise good report so far. The shots on my left side are done Wednesday so I will be back to report if I get that horrid migraine after the shot and my progress from than on. I'm relieved that I have no numbing or weird feeling from getting my pain receptors burned thus far and have seen some head pain diminish dramatically. Adios until lata gata

Doctors Oh My

However this brings me to my next agenda of hammering a very important thought in your brain. DO NOT TAKE A DOCTORS WORD AS GOLD just because they have MD at the end of their name because EVERYONE makes mistake (yes even you). A have been able to catch a few mistakes since my diagnosis 10 months ago. Today mistake I would have never caught if it weren’t for taking Anatomy and Physiology and just memorizing every damn bone in the human body.  What procedure the pain specialist and I had discussed was not everything she had ordered and when I made the appointments I put my trust in the appointment scheduler that had my paperwork in front of her to make the correct appointment. I had a hunch that she did not do it correctly and called 3 more times to make sure it was changed and  I of course got the “yes ma’am I changed it” answer. When I arrived for my appointment and the nurse repeated to me what I was having done I immediately new RFA (Radiofrequency ablation) on my head had nothing to do with a medial branch block.  You can only imagine how mad this made me knowing someone who doesn’t know medical terms could have just had a procedure that was unnecessary money and pain done to him or her. They were quick to make the changes and I well THEY are lucky the insurance gave them an emergency okay to proceed so I would not have to come back yet again. 

A couple of tips I have is always repeat to your diagnosing doctor what you understand as your diagnosis. Always get a diagnostic paper from your doctor stating your diagnosis with their signature or heading somewhere on the page. Do your research, Mr. Google is a wonderful man in fact I'm sure your significant other will not mind you having an affair with him! The more you understand your diagnosis the more confident you can feel about how to approach and it approach the doctors. Always have a list of you prescriptions with you and I mean anytime, you never know when you will need them.

Radiofrequency Ablation

I promised to post on my journey with getting right and left supraorbital preauricular occipital Radiofrequency ablation. It was very much pain free unlike the test I received a couple weeks ago for this procedure. I was IV sedated this time when I was informed this procedure would be a bit more painful than the last. I was awake through the whole thing and felt poking but no actual pain. It was over in a flash and my boyfriend brought me home feeling very tired. I went to sleep for 3 hours and when I woke up I was still feeling pretty well. If you know me I have a tendency to overdue it sometimes when I’m feeling good. But since I have been feeling awful the last couple days I decided to do NOTHING at all (which was way nice with the way school has been kicking my butt). Around 8 hours post-procedure I started feeling like I had gotten beat up just like when I got the test shot done. I expect this especially since they are only able to do 1 side of the head at a time (I started with my right since that was where my craniotomy was done). I have take a handful of medicine and still no relief which reminded me I promised to update you all… I just read it could like a couple days for this soreness to subside but I remain optimistic.

Injection 1

I wanted to document my recovery and in doing so that brings the bad ugly and good out of me to write it and let it go of it. It also gives people going through the same thing something to relate to. When I first found out all I've done is research and research and search for people who I could relate to. As you know I've had on going problems with severe head pain over the course of this year more so after brain surgery. I have tried over 16 medications from muscle relaxers pain medicine to neuro numbing medicine.. Worst situation is finding out pain medicine can actually give u worse headaches when that is all I have found that works at times when I'm in so much pain I wish to be in a hospital bed with morphine running through my veins.
My neurologist suggested I see a pain specialist that we had run out of options but I felt like that was my very last straw. However it was time to take the leap and after much research and talking with mi familia I decided it could not hurt to try.
First injection today was test to see it a little steroid medicine injection into my occipital and orbital nerves would at least ease my pain for a couple hours. I stuck with the decision NOT to get sedated for 2 reasons. 1 being how would I know if it was working if I'm all foggy and 2 being I have had brain surgery and to me NOTHING gets worse than brain surgery. It stung like a motha occipitally but otherwise I was able to bare the pain. Once I was done my head my tongue and my neck felt numb and I went from a level 4 pain to a 0! Now once the adrenaline of the painful injection wore off I had a little achy headache but otherwise just sick to my stomach from nerves. It's been 4 hours since the shot, she said it would probably only last a couple hours. My head feels like it wants to hurt but it's not allowed. Like my heart beats with my head but no pain with it. The injections sites are starting to become sore but that is also normal and okay to me.
I have decided I will go for the more permanent injection shot in 2 weeks. Wouldn't it be miraculous if I felt like myself again!?!

THIS person THAT person

I have always been outgoing, happy, loving, active person until I found out about my tumor. I let my headaches get the best of me because I knew they weren't just headaches anymore. I let them open my brain so that I wouldn't take the chance of having seizures or continued pain in my head. I wanted to be back to my active happy loving self but instead I'm THIS PERSON! I'm selfish I'm tired I'm cranky as my head hurts to the point where some days I can't even make it out of bed (rare but reality) THIS is the person I never wanted to be. At work we read everyday about people using pain as an excuse just to get money or pain meds and attention. Sometimes I feel like maybe this is what's really happened to me ...until I get that very real very raw pain in my head where I can't get up and if I want to u have to turn to the medicine. I want to be THAT person I used to be where I never let anyone or anything stop me again. But until a doctor addresses my problem and actually wants to help besides telling me this is normal. THIS Is the new me that I dislike and will try everyday to overcome.

Bored

Day 5 of laying on my back still waiting for my spine to stop leaking spinal fluid. I thought today was the day so I woke up laid in the sun then talked myself into well...more like couldn't talk myself out of getting Starbucks. So I ventured to drive myself to Bashes for Starbucks and milk.
Everyone was staring at me and I knew It wasn't because I was glam because I hadn't taken a shower and frankly today I don't give a ish but then I realized they were staring from the black and blue needle marks up and down my arms (no guys I'm not a needle freak) but what do they care if I've been in agony for days they just need something to gossip about so... I was still thriving and my spinal headache just started to kick in so I took advantage and made my way to jack n the box. Call me greedy but my body made sure I knew I screwed up by the time I had to do 60 miles an hour to get home without throwing up in my pretty car.
So I'm back on my back and honestly the Starbucks wasn't even worth it!
I've planned my next manicure, haircut and fall wardrobe thanks to Pinterest now if some day I could get out of bed to actually wear these clothes and get my hair did.
Brings me back to the lecture of maybe this is what got me here in the first place from overdoing it. I need to drill in my own head this is a new me i have to give myself time to be back to the old me previous to brain surgery.

Headaches Migraines and Spinal Taps OH MY!

I switched birth control pills with the educated assumption that these migraines I've been left with were not from surgery but the hormones. I got the flu then the migraine and my educated guess was not so educated. Riddled with head pain I thought I could no longer bear, a fever and a disappearing bump (disappears when it feels like it) my regular doc felt it was time for the ER.
A ct scan and spinal tap and later I lay in bed with a spinal headache and still Absolutely no answers except maybe I'm still recovering from surgery 6months later.
I can't sit for more than 10 minutes without getting the rushing head pain that feels like my head will pop off my shoulders and vomit will spray out of my mouth.
The 6 more pokes from the hospital visit yesterday which said a blood patch works for 90% of people tells me I'm the 10% that's screwed!!!
So here I am back in bed praying that the next time I sit up my head won't explode. Pretty sure the regular migraines I endure will be cupcakes compared to this head pain. Sure hope my awesome work ethic pays off while I'm not visible in the office I sure need to keep my job dear brain.

Natural Skin Magic

Here goes another positive post :)
I read that some stars use grape seed oil ex. Emma Stone instead of lotion due to allergies and sensitive skin. I have bump red cheeks and my skin is far from flawless so I figured what the heck I have nothing to lose. I have been adding a dab on my whole face eyes and eyelashes at night and then I rub my regular olay lotion over it to absorb. this stuff is AMAZING!
Add a couple drops to sugar and you have sugar scrub and body scrub. Put a bit in a plastic bag and warm the bag in hot water and you have a hot oil mask for your hair.
Best part is it's natural and doesn't cost a fortune and it works better than all the products that have additives. Go on try it!
I use this but any grape seed oil you find at the grocery store works

Answers

I'm not sure how I get out of bed sometimes with these awful headaches and throwing up in the middle of the night but I do! Maybe its my awesome support system of knowing I get to see one of my best friends at work and knowing I have bills to pay and also knowing my strength and independence holds my relationship together :)

Have I been feeling like this since brain surgery and I'm just now feeling it since I don't take a pain pill every time I feel sick I actually suffer through it and try other non narcotic options or is it because something is going on in my body and is letting me know. I have no real answers since I would have to get tests in order to actually find out but more tests means more radiation and I just don't feel that another MRI in 2012 is necessary unless I start exhibiting MAJOR bleeding signs. So I'll take my nausea and my headaches and take my vitamins and try and keep eating healthy and rest when possible. Maybe I'll never feel like I did before surgery but doc reminded me I'm not even 5 months post-op and I may still just be tired and not letting my body relax reeks havoc to my health. Anyway I hope to wake up each morning and forget the way I felt yesterday and just live each moment I feel healthy happy.

Half marathon I will complete you darnet!!

Little vs. Big

If it's one thing I have learned through my journey this year it's that all the little things are just that, little! I used to be a person who would freak out and become very dramatic over every little thing that would go wrong in my life. I suppose now I feel like I have an excuse sometimes for being so clumsy but after being diagnosed I know things such a pimples or denting my own car for not paying attention are all just cosmetic. Money can fix these things and stressing over where and when I will fix them will only cause the devil to be invited into my little world. The BIG things in life are family and relationships, getting up in the morning with a positive attitude and striving to be and want the best even when you don’t feel like it. Don’t pretend to be someone you aren’t but if you don’t strive to be someone better you will never get 110% out of life. So don’t sweat the small stuff J

MY Best Friend

When your sick for a long amount of time everything starts to take a toll. Your personality, your relationships, your emotions and of course your physical health. I often read about men who cheat on their wife when their wife has been ridled by cancer or long term illness. What runs through my mind is do they do it because the wife has become insecure about themselves, is it because they just want to not deal with the reality of the pain their signifacant other indures that they can't fix, or is it because they were weak to begin with and they don't deserve to be with such a strong woman in the first place???
 I know growing up I watched a lot of pain from long term illness effect my home front but I never once heard my father say "I can't do this anymore" or watch him walk away easy because he was sick of seeing my mother and sister suffer. This reminds me that there are still good men out there who will stick by their best friend through everything, the great and the aweful. I don't look at my illness as me being miserable all the time however I have bought of head pain I deal with that can last 2 weeks of a month. I get angry and upset with not feeling 110% I don't always want to socialize but I never once have heard my best friend and love of my life say "he couldn't deal with me being sick" or say he needed to go out to get away from my suffering. He has stood by my side and made our friendship even stronger when I found out I was sick. He never lets me be depressed or give in to a headache and this reminds me there are still great men out there or I supposed I should say great partners.

Thank you MY best friend!

Hills

It's amazing how good I've felt lately especially after starting school again and putting in all this study time. I found out today all it takes is a little extra stress to bring me to square 1 again. After surgery I found myself lying in the dark not wanting the distraction of the tv or company. After today's events I found that true again . I know to get to where I want to be I have to keep striving and the only way to do that is by staying positive. I know internally I have pushed myself to try my hardest and this is what reminds me my independence and success is not based on my degree or how much money I make but how far I can reach based on my own happiness. Never stop striving for something better sky is the limit #thankGod

Past to present (I forgot to post this last month)

Lying here in a tent enjoying the quite chirps of the bugs. When life throws curve balls I feel like it gave me a different outlook on life. Maybe it's something as small as the sky getting a little more blue or actually seeing the stars a little brighter but for me it's seeing the people around me shine more. I appreciate these people around me who don't treat me any different and have respect for themselves and everyone around them. I not only sit with my ears open but I feel what they say.
I often used to miss my childhood memories of hanging around a camp fire after a long day of the Sand dunes but I Finally feel like I don't have to look in the past I can live right now in the present. It is me who can only make my missed memories something of the present. If I want to check off my bucket list I can't depend on someone to have the same list and come with me I need to reach out and make them happen for myself. So as I close my eyes a little tighter tonight I'll be thankful and look forward to another check mark to reach my bucket list.
Dream big or go home...

Shock

There aren't very many days anymore where I am just down right depressed and confused about my diagnosis but today is one of those days.
I believe I am just tired and since my brain has stopped letting me know I'm tired and my eye is slowly not twitching to warn me my emotions are my only sign. When I'm having one of these days I go into self diagnosis Dr. T mode and research everything from extactly where my tumor is to reading other peoples stories (all much worse than mine). I don't want sympothy or to even be thaught of as any different because the FACTS are all there that right now my situation is fabulous and its just not that bad. I don't have seizures, I haven't had a bad bleed from this new one, I am not alone and best of all my memory and need to keep thriving is coming back!
But days like today I want to read and remind myself where my tumor is and that it's very tiny. I remind myself I still need to give myself time to rest and recover. I'm only 4 months post surgery and to someone with a broken bone or galbladder surgery this is a long time but for brain surgery this is tiny (doctor said 6-12 months to feel normal again). So today I make a new goal that in 12 months I'm not shocked still and I stop having days like today and I'm okay that my brain does wacky things because I am lucky to have the man I do, the family I do and friends :)

Oh and on a positive note I have reached a couple of things on my bucket list:
Surfing (A little rough when your energy level is not back but OMG I can't wait to go again);
Sea World as an adult (so important because when you grow up sure you remember great memorys of going with your family but actually going and KNOWing what your seeing and absorbing the magic as an adult was so important to me expecially the person I went with );
I'm such a foodie when I travel and got to try many new places in San Diego (I suggest Sportsmens seafood) ;
Golfing (is becoming a huge part of my life and although I still suck I'm trying and seem to be making progress);
I get to go to my first country concert in 2 months;
Back to school and loving it; and
Most important is I am finally able to enjoy my/our friends again and not feel so miserable and tired

Not so Lucky News

I'm pretty urked at this very moment so please excuse the complaining....
I often hear, "trust your gut" and I failed to do that so here I am mad at the news. My new (well not so new) tumor is like a cm from the one they just removed. Given it's tiny but I was all set up to have an additional stronger MRI before surgery just to make sure nothing else was lurking....When the surgeons office called me and reasured me it was not necessary they would have been able to see any others on my previous test and they hadn't. I trusted there word over mine and I get to pay for it now. I think for now on if I feel like I need a test even if it's just to make myself comfortable I am SOOO going to just do it. I also was told about gamma knife in the event that this tumor grows and/or bleeds. I think I will start researching that now.
Since these tumors are so close I should not experience any new symptoms I hadn't with the last one and this area of my brain has a high threshold for seizures so lucky me I should be okay. I definitely will not torture myself with the wait game so here is to letting go and living life as if there is nothing lurking :)

Acne Secret

I've decided to write about something less depressing and whiney today yey! I woke up this morning to a fresh face and pores you could not see so I thought I would share my secret.
I have a history of acne and an even bigger history of spending lots of money and caking all different products on my face. Yes this does make it worse but I figured if I was being pro-active maybe it would eventually help. I have had light therapy to chemical peels to medicine oh and how could I forget the Accutane (the so called miracle drug). By the way Accutane works for maybe 6 months not forever and most people have long term effects from it so I advice AGAINST IT! So I finally got the bright idea of leaving my poor face alone. First I tried washing it only at night with soap and in the morning with just water but bacteria is bacteria. Even though my face was not as dry I would still get EVIL pimples. Then I was introduced to Mint Julep Mask (totally got it Walgreens) I think it was less then $5.00. Back to my secret... Shh...

I wash my face with very gentle face soap made for eczema (NeoStrata) and original Olay lotion (not the stuff with all sort of chemicals that claim to make you younger) and last but most important is the Queen Helena Mint Julep Mask 1x a week (preferably night before date night he.. he..). At First you might break out a little but this is just your poors starting to clear out so be patient. Come on you have been dealing with it this long why not wait a couple more days

In the words of my Biology teacher, "If your breaking out in your 20's and beyond chances are you are over washing your face".

2 in 25

I've been MIA since I was still recovering emotionally and physically from surgery. I am not exagerating when I say brain surgery was really traumatic for me. I'm still not over it and it has been 3 months. I have increasing headaches and severe neck pain. I convinced myself I had another CM growing in my cervical spine area so I asked for another MRI (I should probably lay off the radiation for the rest of the year). Of course my results came back with a curve ball I was so not prepared for hit me in the heart. Neck pain is easy I have a little disk situation and a cyst in between but brain situation not so easy... I have been diagnosed with yet another tumor but this time it's 2mm compared to the 2cm the last one was when they took it out. This one seems to be deeper which scares me but I'm 3 days post finding out and I feel at ease. This was a very tough situation to get diagnosed at my age but to find out I have 2 in one year has been pretty crappy. I read a blog the other day of someone who is in pain everyday and I had to stop and reflect because although I have headaches everyday it has been managable with medicine and rest. Yes  I have something growin in my head but instead of complaining I am going to be thankful each morning that I don't have seizures and I do not have the pain some illness can cause. Makes me even more thankful each day because 1 day I might not be so lucky to be free of the things that my mother and sister struggle with. So today I ask you to be thankful :) "Complaining is OK but try not to"

Failure and Success

I said I would keep updated on this post as I recovered and now I know why no one has done it. I could not even stay awake for more than 3 hours. The first 4 weeks after surgery and the pain plus pain meds only ads to the list. Once I started to be more coherent I would remember my blog but getting myself to click on the link and actually talk about what I was going through on paper was tough. I never imagined in a million years the pain and hurdles I would have to jump with such an "easy" tumor taken out of my brain. I had a cut from the middle of my head to in front of my ear and a black eye. The first couple of days the pain was unbearable. I often found myself lying in the dark with a black TV screen in front of me. I felt like doing absolutely nothing but sitting in complete silence. Anything noisy or TV was too much for me.
I had this idea I would get things done while I was on sick leave but guess again because all you can really do is sleep no matter how much you fight it. I was told my body would tell me when I needed to rest. I thought to myself "tell me?" really! Well I was surprised to find that your body really does "tell you". Complete with headaches, body pain and wherever you stand is where you will just decided to lay down.
One thing they forgot to tell me when I had surgery was I would not be able to open my mouth. In fact I started physical therapy for this last week and when we started I could only open my mouth 7mm. Average mouth opening of a woman is 45-50mm so I have some work to do! I'm now at about 25mm and continue to work everyday.
It took me 4 weeks to get back to work and here we are on week 6 and I am still recovering and working as much as I can. Finally Monday I felt the best I have felt since before surgery. I was awake with no headache and felt happy instead of depressed. I weaned myself off all the meds and I feel better than ever! Once you go through something like this you realize how much you take advantage of feeling good and being able to do things like go out with friends, enjoy family etc. Although I am in bed no later than 11pm and need at least 9 hours of sleep to feel good I would say I am making strides. I'm back to running again even if it is only .5 miles. I've made goals and I know as long as I strive for them I will be better than ever :)

Home after 1 day

28 hours after surgery and here I lie at home. I woke up at 3am with more pain and finally they switched meds and I told the doctor it was time to go home. By 5am we were hitting every expectation necessary to get me out. Foli out, walking- check, meds from I've to pill check, MRI check! So here I lie on pain meds in this char thankful to be out and home. Glue on my wound and bruised eye but I can handle all that. The tumor is out and I pray I never have another one. Everyone e has been so great to me including every single staff member at the hospital. I'm thankful for my family and my friends. Mike has been wonderful and everything I could ask of him.
I have no headache just this throbbing ear, jaw, and where stitches are. I can work through all of this with baby steps and support.

Day of surgery

I had surgery at 7:30am and out by noon. I woke up gagging despite the naseau meds and I felt like someone was taking a hammer to the operative area. No matter how much pain meds they gave me nothing would work. It's now 7pm and its a little better plus taking pain meds every hour probably is helping. My incision is actually pretty small and should be easy to cover. I have an awesome support system surrounding me . I'm having a very hard time writting this with being on Benadryl (can't sleep)

This is Not Me

On Friday I struggled to roll out of bed while my head had a very painful ache feeling (this is me and has been an ongoing problem for a while) however when it came time to figure out easy math it made no sense to me and it only got worse from there...
I swear I put my money in my purse but come to find out I left it where my purse sits at home; I got to the gas station and with only 5 people in the store I couldn't function it was too much noise; and the worst part of not being myself last Friday was when I played a scratcher and said outloud, "S.P.A that't not a word. My friend quickly replied, "Theresa that is Spa" and suddenly it came back to me. But to not even recognize a word made me sick to my stomach. I struggled through the day taking any kind of medicine I could to keep my headache at bay and by saturday I felt normal again.
Surgery is in 70 hours and I almost wish it were in 3.

Genetics

We don't chose our genetics and we don't get to pick our parents. Although I would not go back and change my past I have to decide my future. Will I knowing that I have a 50% chance of passing my disease to my child still take that chance. My mother did not know it was genetic and even so we haven't discussed what her deicision would have been. I have head opinions on both sides. One saying God will decide and two saying why would you even take that chance. This has also been the cause of my indecisvness plus I'm not having a child yet so I don't have to make that decision officially yet.
I have always wanted to adopt a child but also having a child of my own was

1 Part Compliment; 6 Parts Criticism

I wake up with headaches every morning and it’s a grim reminder that something is lurking in my brain. I have watched myself become sick, temperamental, withdrawn and unmotivated. My nights are often cut short because my headaches hit me like a ton of bricks and I see the people that love me most deal with my symptoms too. After a mean episode it’s like I snap out of it and I have to ask myself why I was so mad.


Last Sunday I was hell bent on being mad on my way to church and in my head I had every right to feel the way I did. That is until I walked into church and the Pastor gave a statistic. He said for EVERY 1 WORD OF ENCOURAGEMENT WE GIVE 6 WORDS OF CRITICISM. He continued on to say that this is why people excel at work and they leave their family life to fall apart in the background because at work we see encouragement when we do well and at home we often take our stress out on the person who loves us most.

As I heard those words all those feelings I felt I had every right to have disappeared and I automatically wanted to call my boyfriend and apologize. In reality he did nothing wrong in fact he was attempting to fulfill a request I had the day before. Luckily I still have an excuse for 14 more days and some of this is out of my control. But after 14 days I hope I can keep this statistic close to my heart and everyday wake up reminding myself to be thankful and help others around me to be positive.

Here is the link to the sermon courtesy of Sun Valley Community Church in Gilbert, Arizona: http://vimeo.com/38713396

Thankful

When I called to make my appointment for surgery she asked how soon I wanted to have it done. Assuming since people flock from around the world to see Dr. Spetzler, he wouldn't be able to get me in for a couple of weeks I said as soon as possible. The voice on the other side of the phone responded, "how about next week?". Ummm... I think it is finally setting in and that is way too soon for me to get prepared. Not only am I scared to death but the only way for me to manage that stress is plan. Plan if something happens to me all my wishes and who will watch me and help me through this. My favorite thing about this is my Nina (who literally is my angel) offered to fly my father in for a week to take care of me and stay with me in the hospital. This is extremely meaningful to me because as I mentioned in a previous blog, me and my dad are best friends. When my sister was in the hospital she had my mom while I stayed at home with my dad. So now even though I will be the one in the hospital I will still have my daddy. On another note I will have my family, my best friends, my Tia and boyfriend when I wake up. Each one has played such an important role in walking with me through this yellow brick road. My best friends (Angie, Heidi, Heather) have accompanied me to doctor’s appointments and helped me on paper, emotionally and physically get to this point. My Tia has allowed me to be selfish and sacrificed her own selfishness to take care of my grandparents and also be by my side through this. Also I know she will be the one to take care of me when it's time for my dad to leave and I get released from the hospital. I have been fortunate to be raised by each part of my fathers family but extremely fortunate that I have had my Tia Lisa, my Nana and my Tata. We have each others backs no matter what and being in the same house for so long day in and day out has made us that much closer.

As for my boyfriend, (by the way calling him my boyfriend sounds so underrated) has been my rock. We have not always been so strong together. We have gone through letting immature people pretend to be our friends, butt heads and argue over who will wear the pants :) but that led us to being powerful together. We met 2 years ago on the 27th of this month and officially started dating 2 years ago 5 days after my surgery but you would never know that we haven't been best friends for life. He knows what I'm feeling before I feel it. He knows what will make me strong and all of our memories together make it much easier for me to run away from being petrified and be in a blissful place.
I know that no matter how I come out of surgery in 14 days that these people will never turn their backs on me and never let me turn my back on myself.

The Time Has Come!

When I found out I decided that giving up was not an option even though everyone disagreed. I figured if I gave up and went and got surgery my brain tumor would win. My headaches were bad and they have only gotten worse. I usually get at least a C on tests that I barely study for. I knew since my memory has digressed I would have to work that much harder. What I did not know was that even if I studied for endless hours I still would not be able to pass with even a D and all that time I struggled to study over my pain and stress would be pointless. I tried even harder for this last test and I had every bone in the body memorized until I walked into class and I lost almost every word. I got that test back yesterday knowing that if I did not pass with at least a C I would have to give in and get surgery and try again after my brain had sometime to heal. The teacher did mention that I did better than most of the class but it still was not even a C and I had no chance to pass (with a grade I would need). It was a bitter sweet moment. Bitter because I had worked so hard to try and prove myself right and now I’m scared knowing my head will be cut open in just a couple of weeks. However, the sweet moment came knowing soon I will be out of pain and soon I will be able to jump over this hurdle and move forward with the future that I have planned.


I searched the internet for endless hours yesterday searching for the pain I will expect after surgery, my recovery and maybe what my scar will look like…I came up empty handed!!! With that being said I will take you through my journey so that if you go through the same thing as me you will be able to have a better idea of what to expect and not just medical jargon on Google.

Friend vs. Acquaintance

What does the word friend mean to you? What does the word acquaintance mean? I had to stop and ask myself yesterday what these two terms meant seeing how people around me use these two terms so loosely. In the Webster Dictionary Friend is defined as: one attached to another by affection or esteem or an acquaintance. However Acquaintance is defined as: a person whom one knows but who is not a particularly close friend. Now wonder there is so much confusion…

In my last blog I mentioned that my Nina used to say, “You can count your friends on one hand”. I grew up with the understanding that a friend is someone you can turn to, be honest with and both of you help each other achieve your goals. In order to be a friend you both have to bring values into the friendship just like you do in order to have a relationship. Acquaintances are people I work with and Facebook “friends”. I let go of Facebook for lent and it really has shown me who “who I am particularly close friends with”.

On my birthday each friend of mine brought something special to the table (even as little as a text). I don’t have to keep in contact with my true friends constantly, we touch base between our busy lives but know we can talk about anything and can always lean on each other.

When I found out I had a CM I was not afraid to tell any of my friends. I did not have to worry about how they would feel about my diagnosis because I know right than it was about me and when I was ready they knew I would address their feelings. Yes my boyfriend is labeled my boyfriend but the day I knew he was my best friend is when I did not hesitate to call him seconds of finding out and just balled on the phone until I reached his arms. Not once has he been selfish about my diagnosis. He let me mourn and would not leave my side but when it was time to get back on my feet he stood beside me. My friends have come to doctors appointments with me and made sure emotionally I was okay. I have no doubt that my friends will be there in 8 weeks when I’m scared to death and on my road to recovery!

That is what I call a friend and I wish people would not use the term friend so lightly. Would you call just anyone your family?

25 and 5

For the past several years my birthday has always taken a dramatic turn. When I turned 18 I had this awesome plan to visit the beach for my birthday even though my Nina (God Mother) was sick with cancer. Everyone told me she would be alright but the people I was with ended up injured in an accident and we had to come home a day early which was the night of my birthday March 10th. The next morning I watched my Nina take her last breath. A moment I will hold on to for the rest of my life. God brought me home for a reason that night! Ironically my cousin passed away in another city 35 minutes before my Nina (also of cancer). They were both very close. I like to believe that when he passed away he is the one who came and got my Nina so they could go to Heaven together. Fast forward 4 boring birthdays later and again an uneventful birthday full of alcohol and shots as if I were just turning 21. The next morning March 11th I woke up hungover to the devastating news that a Tsunami destroyed Japan. I felt like I woke up to the world ending. I went to my grandparents house thinking we would be celebrating my birthday, only to find that my Nana just had a stroke and I had to call 911. I got threw that day listening to people feel sorry for me but my Nana is still alive, so what if I couldn't celebrate my birthday. My Nana being alive is what matters most.
This year I decided I would not have any expectations and in fact we started celebrating a week early just in case tragedy hit again. I cannot remember the last time I had such a great birthday. I celebrated with true friends and did what I wanted to do. Every person in my life made it special for me! From my boyfriend spending quality time and my Besties making me dinner and buying me lunch. I am truly thankful for everything God has given me and even if/when tragedy strikes I know I need to be thankful for the little things because they are what mean the most.
Today its been 5 years and I went hiking to reflect on my Nina and everything she brought into my life. She always had many wise words to say and the one that would fit here is, "You can count your friends on one hand but your family is endless"

Dr. S and Dr. S

When my mom was being prepared for surgery yesterday Dr. S (not Dr. Spetzler) walked in and talked with my mother and I and answered all the questions about her surgery and recovery that she did not remember from her appointment. He was very kind but in my own head I was thinking NO WAY will anyone but Dr. Spetzler be doing my surgery. He changed my mind today when he walked in to check on my mother. He has had a constant smile since we met and so kind to my mom even though she can over talk sometimes. When I asked him if he assists Dr. Spetzler in all his surgeries he said mostly and asked why. I told him I would be having mine in May. His quick response made a huge impact on me. His reply was "I heard and I took it upon myself to look at your MRI yesterday and it is in a good spot, I can mostly certainly try and be the one to be there". The fact that after hearing my story he took the time to want to see what I was going through made me smile.

I was very embarrassed about this diagnosis for a very long time but since my mother have told our story to many interested nurses, doctor's and such the last two days I feel special. NO not because I have to have surgery or go through the associated pain but because you know what? I don’t have to do this alone. Since I can remember I have stood by my mother and my sister's side watching them suffer and repeating how I would never be able or want to survive what they have gone through. But the thing is I'm just as strong and going through this with them I'm more educated on the subject then most people with CM's. I am not scared of the CM I was scared of what it would make me become. I have no reason to be afraid anymore I'm very lucky to have people in my corner, mending the relationships I never thought were restorable and a chance to make my goals happen.
Update on Neurologists: I went to a new neurologist yesterday and I have to say I hope he never retires and continues my care forever. He did not act like he knew what was best for me but rather he listened to what I wanted and needed to feel comfortable with my diagnosis. Then he gave me his opinion and gave me options about how we would go about making me comfortable until my surgery. I have never walked out of a doctor's office feeling like I made a friend until now. Bonus: His staff is just as welcoming!

Confessions

Growing up I watched my mom and my sister struggle with everyday life having Cavernous Malformations and the seizures that plagued them. I took there struggles as being lazy, excuses and well they were different. I wanted to be NORMAL! Your asking me what normal is? Yeah I have no idea now but then I would tell you normal is going to college, having handfuls of friends, experiencing new things, having an awesome job, making lots of money and being positive. Now that I know I have a CM I see things a lot differently. I’m constantly exhausted, have a headache and yata yata yata…
As I sat with my mother as all the doctor’s who will be participating on her surgery this morning flooded in and awed and owed over the fact that “both her daughter’s also have CM’s and Theresa will be having her FIRST surgery in 9 weeks” I realized I am not any different. I too will have to go through the same struggles they went through and it has to be an independent decision to have the power within myself to want something more then just I have CM’s and all the issues that come with it.
I’ve learned to be a little less judgmental and a little more understanding. I hope that the people around me don’t judge me for my struggles but judge me for my accomplishments.

Say and Do...

Finally I have come to grasps with the fact that Yes I have a disease and No it won't run my life. Most of my posts have been sort of negative and me trying to find the median between not feeling good and taking one day at a time and living it to the fullest. My life was turned upside down. Every thought I had made up in my head and plan I had for myself (yes I plan everything out) was destroyed and I would have to re-route everything…Well so I was convinced. My only cooping skill was to pretend everything was fine but really who was I fooling. I’ve taken 15 steps backward and for the past couple of nights I haven’t gone to bed without thanking God I could not be happier with the way God has made my path. He often puts things in your way but I’m in the process of teaching myself even if it’s exhausting to jump over them, it’s even more exhausting to stand there and stare at it.
I said I was going to live my life to the fullest while instead I would go through the motions and cry myself to sleep. I finally feel like I might be living again. Between studying I’ve managed to keep my house clean and start walking again hopefully start running again in the next couple days. I went back to church and watched my best friend her sister and sister-in-law (which is like my own family) get Baptized. I cried joyful tears watching them take the next step to allow God in there lives. After everything they have been through the last year they haven’t let it stop them living life but rather make life greater and more meaningful. I wish the center of our circle were here with us but I know that I was lucky enough to have her in my life for the little time I did.
My boyfriend finally took me shooting after begging for 2 years. I can’t get over the flinching part even though I know the gun it not going to bite me back. So I guess I better keep practicing. I’ve wanted to learn how to golf for a long time and now that my boyfriend has taken this as his new hobby hopefully he will teach me this weekend for my birthday. After my surgery I think I will get some lessons from the pros!

I have to get back to studying I have a test to A’ce tomorrow!!!

Magic Pill

I am overwhelmed with the feeling I CAN'T WIN. I'm constantly exhausted, constantly have a headache, and I can't concentrate and not to mention where my memory went (if you find it let me know).
I thought I would be able to cut my hours at work but I don't want to rock the boat. I have 11 weeks of this semester left but everyday I cry and ask myself why I don't quit and just go have surgery. I'm confused! Can't there be a magic pill that will take away everything I'm feeling and give me concentration for 11 more weeks. PS this magic pill can't have side effects so...guess I'm out of luck. I wish someone would come to me and tell me what the right thing to do is. Except that will be a problem since I don't listen. One side says don't give up its only 11 weeks and the other says 11 weeks is a long time to keep feeling like this and wouldn't it be nice to live life again without feeling this physical and emotional rollercoaster. So God if your not going to send that magic pill will you make my asnwer a little clearer or give me peace so that I can get through 11 more weeks. Thank you!

Balance

I have found that when I am at my weakest I don't talk about it I don't write about it, I cry inside about it. If it's not one thing it's another and all my coping skills I had taught myself to manage I am having to re-teach myself a new way. This is by far my hardest semester in school and not just because I am dealing with my diagnosis and not because my Nana is on a health rollercoaster but because I am taking 3 science courses at the same time and I have never taken hard classes together.


Giving up is not an option so everyday I wake up trying to find balance. I have become a little more selfish then I used to be; putting myself in front of the needs of others. Some people are having a hard time understanding that and others don't know what to make of it but if I don't worry about me right now my scale is going to tip and every piece of effort I have maintained through this ordeal is going to tumble over. My grandparents have always been the reason why I keep on going down the path I'm on and always striving for something better. They are what matters and they understand where my time is and should be. It's all about maintaining balance!

As for my diagnosis my headaches are still getting worse they start at 3pm and last until sometimes 8:30pm. This makes it extremely difficult for studying. I have gotten a lot more restless no matter how much sleep I get. I started taking vitamins and making sure I reach all my food groups but still my exhaustion is getting the best of me. I'm still waiting for Barrow Neurology to call me and schedule an appointment with a new Neurologist (3 weeks now) but still no call back. Apparently the doctors are the ones to review the file and decide if you are a good candidate to be their patient (which I am all for because then I know the doctor is all about me and knows what I am going through) So since the squeaky wheel gets the grease I better call them again. Maybe just maybe this doc will be able to help get me through this semester. Approximately 79 days to surgery and this semester being completed. I suppose I should reward myself after this semester but not sure how to reward myself for getting through something I never thought I would be able too.

Surviver

2012 was supposed to be my year for success and maturity. In January 2012 I found out about my tumor and I started two demanding courses in college. In February 2012 the reality of my nana's illness set in.
When someone else is feeling sad or feeling sad for me is when I feel my strongest. I get to look at that person and remind them I am a strong person and even though life is not the way I wished it to be, I am a surviver. When I am alone I feel my weakest. If I have a headache it's a reminder I have an illness. I could have a seizure at any moment and what I am doing at that moment could change my life. I'm scared to take a bath when I'm home alone or to drive long distances. But when someone else knows my fears I fight them because I am a surviver.
I can't say that tomorrow I will feel the way I do today but I can say that for tonight I'm safe. My nana is fighting and I will continue to fight too because her number one concern for me was to never give up or give in.
Trying to be a student, work full time, a girlfriend and most importantly be by my Nana's side is not ideal but I love each one of those things and I know God has a plan for me.

Day by Day

I started an online college course the week that I found out I had Cavernous Malformations. Four days later my go-to class started. I got myself to class and I heard half of what my instructers said and the rest was waiting for symptoms and feeling the symptoms I had already felt x10. When I would get home from work or school I would crawl in fetul position and feel sorry for myself. This was not me! I'm the sort of person if I do not stay busy my mind gets me into trouble, so lying there only made me feel worse. I got to the point in only 2 weeks where I could not stand myself and the blob that I felt like I had become. I haven't felt like a blob in over 2 years when I started living my life for myself.
I decided last week enough was enough and I started to play catch up with studying and I needed to live life the way I said I would one day at a time and like I might not get tomorrow. Guess what... all my symptoms went away. Well, besides my headaches. I found that having a normal routine and keeping myself on a schedule without over stressing has even helped keep my headaches at bay.
I think we are our own worst enemies. If we believe something we can trick our minds into feeling a certain way. If you think positive and truly believe positive you will feel positive.

Dr. Know it All

Before I came back to post on my news from Dr. Know it All, I needed to gather my thoughts and put myself back together again. As I tried to hold myself in one piece it only made the process of acceptance longer. Finally letting go and letting myself feel the way I really did helped me accept my fate. Although I felt strong up until the point of going to see Dr. Know it All, his confirmations only made it more real (Which I think no matter what he said surgery or no surgery) the outcome emotionally would have came out the same. Before I start I want to confirm that I call Dr. Speztler Dr. Know it All. I switch his name for no reason other than I just feel he really does know it all. So...

I sat at Dr. Know it All's office for 2 hours. I thought going early I would be able to get in early but knowing that people come all around the world to see him I should have thought that through better because my anticipation just kept getting louder and my what if's only grew taller. By the time Dr. Know it All's sidekick walked in I was just ready for it to be over. They corrected what Dr. Bad News said and confirmed what I thought, that surgery needed to be done. (Honestly I do not think Dr. Bad News can even read an MRI) They answered all my medicine questions and also referred me to another neurologist who worked close with Dr. Know it All and who would oversee my care. They released me to keep running marathons and explained my tumor was in an easy spot to retrieve. Of course many things could go wrong but mostly the only things I have to worry about from now until the surgery is memory (which I do not seem to have much of anyway), headaches and irrational decision making. I'm pretty sure the irrational decision making can be made as an excuse in the future but for now I think I'm still making pretty rational decisions. Including the one where I decided to wait 16 weeks to have surgery. Yes I can start having seizures and yeah my headaches might get worse but chances of any permanent damage are very slim. I opted to wait because I have been in school for a very long time trying to decide what I want to do. I finally decided on my degree and missing a whole semester messes up MY plan. I'm also not very good at standing up for myself and sticking to my decisions. I decided for now on nothing will hold me back and I run my life especially not my tumor! I'm not sure where God is directing me but I do know he has reassured me this is the right path for me.

I'm finally starting to get my life back to normal and not feel like I’m on an emotional rollercoaster. This has helped my headaches tremendously and also get back on track to ace this semester. I will wake up every morning thanking God for giving me another day and when I go to bed I will be thanking him for the strength he’s given me to get through the day in the most normal way possible.

What if...

It has been a rough couple of days and a lot of what if's. I do not get to see Dr. Know It All (Dr. Spetzler) until next week.
People come all around the world for Dr. Spetzler to work his magic on their brains. I say magic because God truly gave this doctor a gift and he in no way is wasting it. I am a control freak and if I can't plan my day or control what is happening in my day I am uneasy. I know once I see Dr. Know it All even if he tells me I have to wait and see, I will be okay with it. I do not normally trust doctor's in fact I trust none but seeing the amazing surgeries he has done on both my mother and sister, I will trust and I will allow for my mind to rest. He has the voice of an authority who tells you exactly how it is, does not care if you like him socially and you take what he says and it just makes you feel safer.
If I find out I can have surgery I will go to Disneyland for a day or two. If I find out I have to wait...I think it's time to rent a beach house and relax.

Stop me...NO WAY

I got the news 6 days ago now and I'm not sure where those 6 days went besides living life like a robot and trying to reorganize my thoughts. I have been attempting to train for a half marathon for 6 months (between work, school my family and making excuses). When I found out about my brain tumor I was asked if I would still run that coming Sunday. Without hesitation my immediate response was DUH! nothing will ever hold me back. So... I would actually have to put a medical condition on my ID Bracelet oh well. In fact knowing I had a medical condition that might hold someone back made me want to strive that much more and excel at this race.
I beat my projected time by a whole 15 minutes and if you are a runner you know that’s a lot of time. First half marathon (PF Chang’s Marathon 2012) and I made it in 2:17:27. I had never run 13.1 miles before but I knew I had to make it. I believe pain makes you stronger and I also believe it makes you strive for more.

The saying you can sleep when you die and live everyday like it is your last has never meant more than it does NOW.

What To Say?

I do not have much to say today since Dr. Bad News was Dr. I Have No Clue! Not only could she not answer any of my questions about what I can do as precaution to help my tumor not to bleed but what the game plan is. I found out that I have a tumor in my right frontal lobe but not what that can affect. She clasified it as small but according to my research .8 to 1cm is small and mine is 1.7cm.
I have an appointment with Dr. Know It All in a week. Dr. Spetzler (Dr. Know it All as I call him) is someone I know because he has performed surgeries on my sister and mom and he is a tell it like it is kind of Doc.
For now I feel like I got off the roller coaster since I found out my tumor started growing in 2005. They could not diagnose it at that point since it was only slightly enlarged vein. If it took 7 years to get to this point I would say I'm doing pretty darn good. I am officially sick of hearing people say their life sucks and complaining because not even I can say my life sucks. So I hit a bump in the road...but the people holding my hand through this rock and I know I will never get stuck. Don't forget to Pray for me :)

Dr. Bad News

On three hours of sleep it was time to start my day. It was pretty normal day besides the whole three hours of sleep I got (but well worth the fun the night before). I got an MRI during lunch break and by the time 4:00pm hit I was starting to feel dilerious and was ready to go home and crawl in bed next to my boyfriend. On my way home my phone rang and all I heard was:

Dr.: This is Doctor Bad News

Me: Okay

Dr: I have your results already

Me: Okay...

Dr.: You do have a tumor and it is a Cavernous Malformation

After that I felt like I was driving through a tunnel and the last thing I remember hearing is "your headaches will get worse and I will see you at your next appointment".
See, I grew up with my older sister and mother having seizures and multiple surgeries. I had a very close relationship with my father and we were more a like then not. We did not have seizures and we both loved sports. Even though I was told to get an MRI I never thought in a thousand years that I would ever be diagnosed. I went several years without getting an MRI and after taking a Biology class in College I decided I was more interested in if I carried the gene that causes these tumors.
I have had frequent headaches that gradually have gotten worse but keep in mind that I am a full-time student and work full-time so that is pretty common. When I was told the MRI would cost me $500 out-of-pocket I declined the test and decided if I ever have symptoms like seizures I would get tested. Yes I'll spend $500 on shoes but an MRI, that does not look pretty on my feet! Well... think again Theresa, because parents know best and my grandfather, who did most of my child rearing, was not going to allow me to skip on this test.
Once Dr. Bad News hung up the phone my world fell out of my eyes about 10 tears at a time. Immediately I called my boyfriend and instead I got Officer Boyfriend who immediately calmed me down. I'm not sure of his exact words but pretty sure it was basically "get over it, you don't have symptoms yet". You might think that is harsh but next time you have a life changing event trying to drive you would be glad to have a blunt stable voice on the other side of the phone even though he just received the worst news with you.
I barely remember getting home through that tunnel but once I was home I tried to sleep it off. After more tears and every time I would wake up I would feel like I just woke up from a nightmare but NOPE it was reality. I really did have a tumor and I was going to have to deal with it ready or not.
Since I've grown up with these tumors I am very familiar with what they are and how they work. I suppose this gives me one leg up on accepting my diagnosis and getting over it. I am very used to taking care of everyone else in my life and now the only change is I'm the one who has the tumors now and am going to have to take care of myself instead of everyone else. So appointments have begun to be scheduled and I will follow the yellow brick road on this adventure that God decided I was strong enough to get through.