Tuesday, July 20, 2010

From The Diary of This Tumor Chick

I know it's been way too long since my last post. I've started this post so many times but could not finish. I didn't have the words. At that point I had just got diagnosed with ONE spinal bone tumor which the doctors here thought for sure was cancerous. It's been a couple of months now, hard to believe. This one, this fight, hasn't beat me, but it has sure enough kicked my butt. Maybe even a couple of times over. OK, umpteen dozen times over. I know it's crazy to say that this was worse than the brain tumor, but I think it was.

I've not been sick very much in my life. With the exception of a few minor (very minor) blips in the road I've been a very healthy girl. Always active, always moving and always pretty healthy. So when the brain tumor came along it was devastating. It was earth crushing. But...(there's that but) I was up for the fight. I was resilient. I was poised for the battle. When the spine tumor came up (along with the numbness in my left arm/foot) things were different, I was not any of those things. I was still very much at the bottom of the barrel as far as healing from the brain surgery. I was climbing, grasping, and clinging to ANY progress that could get me back to a place I call normal. I was still very much weakened by the fight.

Going into the doctor, initially, I knew an MRI was in store. My history, along with numbness, a doctor would have to be an idiot not to do an MRI. Of course I was nervous but in all honesty, I thought "there's no way, not again, not so soon"! So as I read the devastating words that proved my philosophy very wrong, I cannot even describe the crushing blow. It was as if someone took away any security I had for the future. Any hopes. Any dreams. Any progress I had made. Blew them right away in one single awful moment. Seriously, what the freaking hell!

Of course I went through the natural sadness I've become so acustomed to but this time I was just mad. Not mad at anyone or really anything. Just mad and so angry. I asked questions that I really didn't ask with Egore (brain tumor). Why? Not why me. Just why. Along with "Are you kidding me? Like really is this a joke?".

I wasn't myself, I'm not sure if I even am now. I cannot describe the amount of anger and despair that has run through these bones. Anger I have never known before. It's been days, weeks and even months of despair. I've held my head up the very best that I possibly could but mostly just for my kids. I've made little to no effort to do it for others. Not even family or the closest of friends knew how to reach out to me. They tried. Of course I put on a semi-happy face but they knew. They could see through it all. I've withdrawn, from life in general. I simply did not know how to just 'pick up' and go on with life. I've gone through the motions but that's about it.

A little back history...When I went in for the headaches in October 2009 (pre-knowing about Egore) the thing that struck the doctor as odd (OK there were a few things) was that I had little to no reflexes on my left side and didn't feel things very well over there either. These were symptoms I had not yet realized but came up during the exam. So although she did not expect to find a tumor, if there was one she was expecting it to be on the right side, which would explain the left side difference. So, when it showed the tumor on the left side everyone was pretty perplexed. Doctors at Mayo warned me that the neck pain (which I thought was associated with the head pain) and numbness (that I could not yet feel) on the left side may or may not resolve with brain surgery. That we may indeed still have to look into all that but the brain tumor had to come out then. I had begun having seizures, the symptoms were far from tolerable, it had to come out. I never thought much more about my neck or so called numbness. That is, not until the neck pain had become intolerable once again and I could actually feel the numbness.

The three weeks I had to wait, after getting initial diagnosis (of spinal tumor) was unimaginably horrid. Especially when you're told the worst. That was a war in and of itself not to go crazy waiting. I guess that was about a month ago that I finally went to the Mayo with all this. I got some wonderful news and some equally horrible news. It was like giving me hope and then snatching it all away.

The spinal tumor, which I have named Borus (yay JoAnn), was in fact benign. Awesome, oh so awesome news! But...(man I am hating the buts) there were tumors within the bone of every single vertebrae from T3 down. There's the horrible. To top it off they are completely inoperable. Not only because there are SO many but because getting to them, getting them out, could kill me. Nice. (very sarcastic) That's all I could say...nice. Any amount of positive thinking or will power that I had left was sucked right out of me at that point. So now the battle is how to treat them and if it's Borus causing the neck pain/numbness at all. Before we begin treating or not treating, depending on what we decide, we have to rule out everything else it could possibly be. Any unanswered questions the doctors have about possible causes must be answered. Words were uttered that I never ever thought I would hear. Things like MS disease. Things like Pain Management. I wanted to scream. Literally scream. "I DON'T WANT TO MANAGE MY PAIN FOR THE REST OF MY LIFE, I DON'T WANT TO PATCH IT WITH PILLS! I'M READY TO BE WELL!" I refrained. From yelling at least. I did tell him while sobbing that we just needed to figure this out. He is a typical man. Great doctor but typical man. His response was at first concern for my tears but then "I think there may be a little depression going on here too". I pointed at the computer screen that was on the table and displaying the awful pictures of my spine and said "ya think". Probably not my best moment but he at least got it. He changed his words to "I think maybe there is reason to cry". Again...ya think?! We made arrangements for the testing to begin and he once again assured me we were going to get to the bottom of all this. He promised he would return me to an active life again. I was tempted to ask for that promise in blood!

Which brings us to this last week. I spent most of last week back in Jacksonville (my second home) having tests done which included a spinal tap (YUCK!). I did great the day the 'tap' was done and thought I was in the clear for complications but of course (because at this point I kind of expect the complications) the next day the spinal headache, caused from extracting fluid from the spinal cord, set in. So I spent the next two days flat on my back doing anything I could from that position (which isn't much) to keep me from going stir crazy! Which by the way didn't work. This trip I took my oldest friend Ashley (known her since her birth, I'm 3 months older) which was fun. We were two crazy girls in that hotel room. She's a yoga instructor which came in oh so handy! We did some 'laying down' yoga. Which I know does not sound like much but really it was great and made me feel better.

On Friday, I finally got another spinal tap, this time to insert a blood patch so that I wouldn't leak anymore fluid. It immediately stops the headache by returning pressure to your head. I also saw another doctor attempting to lessen the pain and the medicine that I'm having to take to keep the pain at bay. I have no results from anything for 2 weeks this time. Of course. These tests have to be sent to their facilities in Minnesota.

So Ashley and I left Jacksonville. Without any answers, no results and a crazy painful back from two spinal taps within one week. Home to my babies. Home to snuggle them up. Home to pretend that mom is perfectly fine and didn't endure anything while gone from then. Pretending has become essential.

The intense pain is for now (thanks to many many pills, which I lovingly call my tranquilizers) at bay. Still there, but not near as bad. I can function, which let me tell you, is great progress. I need a plan. I need to know the solution. I need a map of what to do with all this. I am, by nature, not a planner. Probably the exact opposite. For most things I tend to fly by the seat of my pants, which drives some people CRAZY! I LOVE it. It is me. I work best under pressure. I'm a last minute girl and it works for me. So for me to say I need a plan is a little out of ordinary. I've always said "I can deal with anything, I just have to know what it is that I'm dealing with. Then I can make decisions accordingly". That has applied to every aspect of my life. Give me the status, the report on things, the truth and I will deal but I have to have the information first. Even with Egore, there was a plan. I got the details. I knew the risks and I made decisions accordingly. It was very cut and dry. It was scary as hell but I had a purpose, a goal, an end result in mind.

This time there is no plan. There are no details. Just a lot of unanswered questions. It is driving me nuts. I couldn't begin to tell you how much I desire to leave all this behind and return to life. I WANT TO BE WELL! More than anything in this world that's what I want.

I've had no words. No words to type. No words to say. No inspiration to share. No guidance to give. I didn't want to be told there was a purpose for all this. I didn't want to hear it was all going to be better. Not that all of your well wishes weren't appreciated so much but I just wanted to scream "WHEN?! WHEN IS IT GOING TO BE BETTER!"

I'm doing OK now. Not fully but a little better. The pain easing up has helped a lot. To say it's been hard would be a drastic understatement but the fighter in me is rising again. I can't say thank you enough for all your wonderful words of encouragement, thoughts and especially prayers. I don't always respond, there are days I just can't, but they don't go unrecognized or unread and they do touch me tremendously. Please keep them coming and pray for answers!

As of now, there is no death sentence but this tumor chick definitely feels like she's fighting for her life! A life without pain, a life without tumors...a simple life.

8 comments:

Anonymous said...

Francis,I must comfess to praying for the physical needs and forgetting the emotional, spiritual ones. If only I had put myself in your place I would have known they were HUGE. I promise to do better! Much love through cyber space to you. Jane

Anonymous said...

Love you, Frannie. When you feel up to it, there is a little place up in Boston that always has the door open for you and your family. : )
Leslie

JoAnne Tyran said...

Frannie, you have my prayers, my support, my love and , oh my gosh, my complete awe!Thank you fro sharing. Call me if you can. I'll get Brae when Jeanne is here if he wants to "run with the boys"

Anonymous said...

Hey Frankie! "Tumor Chick" huh? Well you will always be crazy Frankie to me. I'm praying for you and thinking of you. I can't do much but I can tell you that you are loved. Susan

Anonymous said...

Hey Francis. It's Tiffany Fontaine (Harris) now. Am I allowed to just first say that this sucks! I can't begin to imagine what you are going through. I will pray for you and your family as you continue your fight!

Lynda said...

Dear Francis

Thank you for leaving a comment on my blog http://lynda-mybraintumour.blogspot.com/ back in February and you cannot believe how bad I feel about only just getting back to you.

I have taken the time today to read through your whole story and the news in your latest post is very disturbing and I am so sorry and sad to hear about it. I know the emotional rollercoaster you must be going through and the total fear and panic you must be feeling and I really wish I could reach out now and literally hold you hand.

My story is so similar to yours in many ways in that regardless of what good news you hear along the way you still continue to fear what may be lurking in the dark and I'm not sure this uncertainty ever goes away when the initial diagnosis is so outstandingly devastating.

When I had my tumour removed back in 2006 I was told by my neurosurgeon that I never needed to have follow up MRI's as he had removed it in it's entirety. But did this stop me? You know the answer to that.. I had another one done at my own expense in 2008 and I have just had another done this year, for what many people would say - no reason. But there is a reason you see - it's peace of mind and still dealing with the fact that you can't believe it happened in the first place, so the whole situation remains surreal.

This weeks fear for me, (even following the brilliant news of the all clear again last week) has eventuated from reading your blog because I too continue to expereince a tingle like pins and needles in my lower left leg and foot. I had a lumbar MRI straight after my brain tumour surgery because of this tingle which showed no tumours. A worn disc that has leaked cushion fluid apparently? Does it still haunt me - you bet it does. Maybe now is the time to have a re-check!

You have a beautiful looking family and I really wish you well on your journey. Believe that there are others out there who know exactly what it is to feel angry because life really does suck sometimes.

Love Lynda

Laura said...

Thank you so much for taking the time to write all of this. You have never met me. I'm a friend of Tori's. I just wanted to let you know that you have support from places you never knew of, and I am one of those supporters. My thoughts and prayers are with you. Your wishes for a normal life are my wishes for you too. I wish I had some magical thing to say to make everything better, but all I can say is that you are an amazing woman with an amazing spirit, and I am hoping for the best for you.

maggie.danhakl@healthline.com said...

Hi,

Healthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.

You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this

We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we'll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.

We would appreciate if you could help spread the word about this by sharing the You've Got This with friends and followers or include the campaign as a resource on your page: http://mybrainegore.blogspot.com/2010/07/from-diary-of-this-tumor-chick.html

Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.

Best,
Maggie Danhakl • Assistant Marketing Manager
p: 415-281-3124 f: 415-281-3199

Healthline • The Power of Intelligent Health
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