Saturday, May 22, 2010

Oh I'm Sick of These Types of Days

Tuesday, 18th of May 2010

It's my beautiful nieces birthday today, she's turning four and having a big girl party at the park. She was on my mind most of the day. I knew she was getting a bike this year and I yearned to be there to see her open it. I called my sister to see how the preparations were going after a quick run down she immediately asked had I heard anything yet. I told her that had to be good news, I mean my gosh the last time I received a call in less that 24hrs about the brain tumor. I assured her that I would just run up to the hospital and get the images and report myself just to put us all at ease. I have to wonder now are these decisions ever thought out? Evidently I just act.

A few minutes later I picked up Bray and headed over to the hospital to get all the info that I knew would give me a clean bill of health (at least as far as the spine goes) Robert works at the hospital and was on break so he sat with the kids while I ran in. In retrospect this was not a good idea. It's like they say hind sight is 20/20. I got the discs and the report and was walking back out to the car, I glanced down at the papers and saw words that were way too familiar. FINDINGS. Written across the very top, detailing how they had immediately forwarded to my doctor for immediate attention. Right there in the hallway I felt my knees weaken. I couldn't breathe. I was taking in air but it simply didn't feel as though my lungs were filling up. The tears were, once again, immediate. Luckily it was a ball cap kind of day and that shielded a lot of my panic and terror from public view. I had to stop once I got around the corner from the vehicle, moments after receiving a huge blow I had to suck it up. My kids were in the car (with my husband) waiting for my return. They could not see me like this. I picked up my cell and called Roberts and explained that I needed a few minutes that it wasn't good. I once again heard that audible gasp for air and a choked down sob. He then had to suck it up. He was stuck with the kids. His coworkers found me weak and pale they went and got Robert and stood with the kids so we could have a few minutes.

It was worse than we could have ever thought. Worse case scenario we thought we were looking a spinal meningioma, which would have been terrible in it's own right. But I know meningiomas, I am well researched, prepared, I know the course of treatment and I could be ready to battle that. I couldn't have been more wrong. This tumor is outside the spinal cord and inside the vertebrae of T3. That's right it's in the bone pressing on the spinal cord.

The radiologist diagnosises it as the rarest type of bone tumors. Upon further research I found that when it does occur it's usually in long bones such as legs, feet, and ribs. The few cases that have been found in vertebrae are so rare and have a significant increased chance to be malignant or cancerous.

I cannot even begin to describe the devastation I felt on this day, it surpasses all. It may even surpass D-Day #1. May 18th 2010 my second D-Day. I have yet to ask why but I'd be lying if I said I didn't ask how. How in the world do I have another seemly different tumor already. There are so many unanswered questions. I did by the way double check with my parents to make sure they didn't drop me in a vat of radiological goo or perhaps adopt me from a country where I had been dropped of at a nuclear waste dump but they quickly assured me that neither was true :) So it really is just 'What the hell'. How could this happen.

It feels different. I can't explain or justify that statement but to just say it feels different and not in a good way. I have NOT lost my optimism, it is still intact but I am not as strong as I was pre-brain surgery. I was just really getting into successful recovery. That concerns me. I was physically prepared for Egore. I was training prior to diagnosis, running, biking, kayaking and hiking. Things that I have only begun to be able to resume.

There's no other way to explain this day but as simple one of the saddest I have ever experienced. I'm 31yrs and 4days old. 31yrs old. How does this happen? Somehow my world managed to slip out from under me...again, but more harsh, so much more cruel. There are no words, there simply are none that could ever express the pain I felt on this day.

Robert obviously once again left work. There was no way I could possibly drive my children and myself home. I had wiped away as many tears as possible to hopefully shield the kids but my mind was shot. I was in auto pilot mode. It felt impossible to think or make rational decisions. I texted my 'essentials' this time. I know, I know that's harsh but I truly couldn't do it. I couldn't even begin the utter the words. Another mass...another battle.

Sometime on the way home Bray stated simply, "There's another one, isn't there". I couldn't help but die a little inside for my child and his unfortunate insight into a world I wish he didn't know. He reached out and held my hand without trying to get comfort from me but trying to give me comfort. How I got so lucky and blessed to have this child I have no idea, but in SO many ways he rocks! I tell him that there is and try to reassure him that we will battle this one just like the other. His only question is "Will this one be as bad". I wanted to tell him that this one was going to be a piece of cake. Not for myself, but for him. But I am no longer naive. I know too much, I know that this tumor world SUCKS!

The rest of the evening was spent in disbelief. Homework, dinner, showers and bed. The tasks seemed so mundane compared to the news we'd just been handed but at the very least kept me doing something. I couldn't even bring myself to call the Mayo yet. That would make it a little too real for that night. Complete reality could wait for the next day.

Could this be reality? This Brain Tumor Chick has yet another tumor!

And So This Journey Begins Again

Monday, 17th of May 2010

It's three days after my 31st Birthday and I find myself once again having an MRI done. This time it's the spine they are concentrating on. My particular kind of brain tumor feeds or grows of the Meninges or covering of the Brain and Spinal Cord so once you have one tumor you're at considerable risk for another in any area that has Meninges.

Having said that I've had pretty severe neck/back pain for some years but it only increases gradually and so your body just adjusts. It's never really slowed me down. Once the Brain Tumor was discovered in my naive mind I lumped all that pain together, the head and the neck. Surely a massive brain tumor can do all that ;) When the migraines slowly left after the brain surgery I knew that the neck pain wasn't far behind so I never gave it much more thought...that is until it hurt.

When, eventually, I didn't have a whole lot of feeling in my left hand, I figured it might just warrant a trip to the doctor. Hey I have my limits ;) Basically he said he thought it was an injury but (oh how I'm beginning to hate those buts) due to my history (aka. Egore the brain tumor) let's get an MRI.

I guess I didn't learn a whole lot from the first go around because once again I waited a couple of weeks to have it done. Seriously what is up with that. I cancelled a couple of times because the timing wasn't convenient, another time because I was sick and almost didn't go today. But I did. I was on the table, on the MRI tube table people for 3hrs. Take it from someone who's had umpteen dozen (yes I just said umpteen dozen, that's a lot, for those who don't know :) MRI's that is WAY too long. Did it alert me...heck no...I just thought those techs had NO clue what they were doing. I was more distressed about not being on time to pick Bray up from school. Didn't give it a whole lot more thought. Sure I was nervous, who wouldn't be, this road is altogether too familiar. To strike twice though, what are the odds of that, within a six month period. I wasn't too worked up over it.

This Brain Tumor Chick couldn't have been more wrong :(

Monday, May 10, 2010

Francis is Super Mom!!

Click on this link to see Francis the Super Mom!! Such a great story, thank you to WJHG for doing this about Frannie!! She is so deserving of this!! So great to see her, Robert and the boys, I wanted to kiss my computer screen. They are just so cute. :) Congrats to Bray and his wonderful essay. Very proud of you buddy!!


Thirty-Year Old 'Super Mom' Battles Brain Tumor

**Updated: So the link right above is to the written story, for the video you have to go and it's on the right hand side under the "Birthday Club" banner**

Monday, May 3, 2010

A Whole Lot of Thanks from the Brain Tumor Chick!

For the last six months (can you believe it's been six months) I have been navigating through my very own individual minefield. Map? Oh no that would make it WAY too easy...there is no map, no directions, no guide, just me, my family and this brain tumor world. But ultimately it's my battle, not something that even my family can fight for me. The's unruly and brutal. This is easily the hardest journey of my life. And that may be the understatement of the decade ;) This very well may be 'the' journey of my life as I am constantly reminded that I will battle regrowth and the very likely potential for more tumors for the rest of my life. At this very moment my doctors and I are keeping a close eye on several spots that could be new tumors or tumor cells. Like I said this is by and far the hardest thing I've ever had to do.

I have recently been reminded that while this is a one-woman brain tumor battle I have an army of supporters routing me on. I cannot begin to explain or express the vast amount of sheer appreciation for the 'love' that has been shown on mine and my families behalf. I call it love because that is all that it could be. Anything less and all that has been accomplished wouldn't have been even a possibility.

The craft-fair...WOW! It is the only word that comes to mind. I can't tell you, all of you that participated (whether you bought or made crafts) how much you have helped me and my cause. The expense of a brain tumor is massive. Not only do we have the actual medical bills but the traveling, gas, food, lodging expenses of seeing my doctors as well. It is an ever-growing debt. I return to Jacksonville to the Mayo Clinic every three months to watch (and it seems like wait) for the tumor to return. I have an MRI and blood work done and anything else that needs to be addressed. Not only are there the medical bills but all of the travelling expenses to go along with that. To top all of that off I have more than a 60% chance a growing another brain tumor, which would involve another brain surgery. All of that does not even include the first surgery. It is immense to say the least and it really hasn't even begun. I'm not telling you all these yucky facts to paint a sob story. I tell you all this only because you all have been overwhelmingly generous with both your time and your wallets and I think it's only fair to know where all of that is going. What it is supporting. Thank you seems so meaningless so flighty but it is what I'm saying. Thank you, thank you, and thank you. You may never know how much you have effected me and my family but please know that you have.

They say there is always a silver lining. I'm not so sure that I buy into that idea. I have yet to find the silver lining of a brain tumor, but (I know there's always a but) I have found some things that I am very thankful for. I'm thankful for the reconnection's I have made with old friends that I had lost contact with. Life gets busy and things get lost along the way. You know who you are and I love you all! Looking back I don't know how I ever survived life without you. You have become an essential part of my life and it feels as if we never lost touch. We picked up almost right where we left off and I couldn't be more thankful.

I am so incredibly thankful for my family. My husband who has taken his fair share and continues to pick up the pieces of this ordeal. He never loses faith in me or our little family and I couldn't have custom ordered a better husband and father. My family, specifically my sisters and my Mom and Dad. You've held me up. You have surrounded me, each of you in your own specific ways. You've done all the things that I either could not or simply couldn't bring myself to do. You've slapped me into awareness and consoled more than your fair share. My in laws, uncles, aunts and Nanny. You've stepped in countless times. You've helped with the've kept me've done so much more than your part, so much more than I could have ever asked. My friends who have stood by and not wavered. It's true what they say, wait till the hard times and you will see who your true friends are. I have unfortunately have had some friends that have chosen not to ride this part of the road with me. In all honesty, who can blame them. I might would run from all this brain tumor crap if given the chance. It's an ugly thing, it is so not pretty. It's horrific and terrifying. It's not fun or exciting or even interesting. I now know the definition of a fair weather friend and that's ok too. The cool thing is, is that I now also know who's in it for the long haul with me and let me be the first to say, that is commitment people ;)

Lastly but certainly not least my kids. My rockin' awesome, unbelievable, coolest kids ever. I have spared them the ugliness of all this as much as possible. But let's face it, they have seen so much more than someone their age should. They are troopers. They have been juggled from home to home, scared, had understanding way beyond their years and have been both kind and selfless. All things that you rarely see in a 9yr old and 3yr old. This brain tumor thing is very unfair to me but even more so for them. Their life should only be consumed with kid things but that is not their lot and they have handled it like a champ. My son Bray recently submitted an essay to WJHG TV for Mother's Day and why he felt like his mom is a 'Super Mom'. I had no idea and that's why this morning when I got a call from a friend to tell me I had won I was in complete shock. Me 'Super Mom'?! I feel so far from that. I have had to spend so much time focusing on things other than my kids that this award seems so unlikely. But here it is...the WJHG winning essay for 'Super Mom of the Year'.

My mom is unbelievable. She's a stay-at-home mom and works SO hard. I go to Cherry Street Elementary and my mom is always there. She volunteers for anything they need help with. Whether it's copying office stuff or helping in the classrooms or planning parties she will help with anything! What really makes my mom special this year is that she is recovering from major brain surgery! She'd been having horrible headaches for about 2yrs but mostly hid them so we wouldn't know how bad she felt. When she went to the doctor we found out she had a little bigger than a golf ball size brain tumor. We were all very upset. My mom though, she stayed so positive. The very next day she was sewing Halloween costumes and making the best of things. Soon after we found out about the brain tumor she began having small seizures, she always made sure that we didn't have to see any of the bad stuff. She made a blog for my brother and I to read when we're a little older. It's of her diary entries so that just in case she didn't make it we would one day know how hard she fought to stay with us. I've only read some of it (I'm not old enough yet) and she is so strong. It makes me love her even more. She had surgery November 30th 2009 and has had a hard time recovering but she once again has not let that stop her. She has stayed positive and made sure my brother, myself and my dad haven't gone without. My mom has shown that she is my hero. She constantly shows all of us how much she loves us even through all that she's been through. This year I almost lost my mom but she stuck around for us and showed us how to fight hard with dignity and that's why she is the best mom ever. I love her so much! Her blog with her diary entries is Read it and you will see how wonderful she is!
Thank you
Bray Spann

This kid of mine is the unbelievable one. How awesome is that?! Now since we don't allow Bray to get on the computer alone I know he had a little help (Thanks Robert). I could not have had a better day than to learn this is what my son feels. I will treasure this forever. WJHG gave us a beautiful framed Paul Brent picture, a gift certificate to a local seafood restaurant and a gift certificate to a florist. Again...WOW!

It is safe to say Mother's Day came early for this Brain Tumor Chick!