Saturday, December 19, 2009

From the Diary of a Brain Tumor Chick

Saturday, December 19th 2009

OK, OK so I know it's been too long since I last updated. I have been very negligent of my Egore Blog. I'm not going to lie, recovery has been much tougher than I ever imagined. Which may seem crazy to those of you reading this but very true for me.

There were times in this whole journey that I was very 'aware' of the reality of it all. The reality that I may not wake up OK, that I may not wake up at all. But I must admit that most of the time I chose an altered reality to live in. One that allowed me to believe that this was all very minor, that I was going in for some 'minor' surgery. My altered reality couldn't be farther from the truth.

I did OK the morning of surgery. No one else did. I was a rock. Solid, unmovable, unshakable. I'm not heartless, I did feel for those around me, but I would not allow myself to get caught up in the emotions. I was on a mission. I had a purpose. I wanted this. To be able to go back to normal. To a normal life. Free from all the medications I now consumed. Free from the pain. Free from the tumor named Egore.

The nurse came out to get me (in the surgical waiting room) and informed us (my family and I) that this is where we said goodbye. No one was expecting this and I swear I immediately heard a audible "oh" from everyone there. It was as if they were all socked in the stomach. For me though, it was good news. No TV worthy walks down the operating room hall following me on a stretcher with lots and lots of tears flowing. It would be quick and simple, my kind of farewell. I've never been a fan of long goodbyes.

In the back, I was able to regain my altered reality. I joked with nurses and doctors. As if we were there for a social meeting. They even forgot to give me my 'feel good medicine' before going to the OR so when I was 'wheeled off' to the OR I was immediately completely aware of my surroundings of my actual reality. I laid down on the OR table wrapped in warm comfortable blankets, still joking with all in the room and suddenly I looked up and they began putting me to sleep and for those few seconds before I went out my mind went there. To that place that made me question whether or not this would be the last time I saw the world. My last words were to my new friend and joking buddy the anesthesiologist. I said "Put me to sleep good, but please please I have to children who need me, MAKE SURE I WAKE UP!" He said simply "I promise". With that I gave in to the medicines that were tugging at my consciousness and quietly went to sleep.

He kept his promise...I woke up! Truth be told, he could have kept me asleep a little longer. Three or four days would have been OK! :) The pain was more than I could ever have imagined. The medicines didn't touch it, didn't come close. I told my family that I wanted everything documented with photos. I wanted a record of this journey, all of this journey. For the first few days I couldn't bring myself to look in a mirror. If I looked half as bad as I felt, I knew I looked rough. After seeing the photos long after leaving the hospital, it was a good call. :)

I semi-awoke (if you can call it that) to my family exclaiming "they got it all! they got it all! Dr. Hanal said it couldn't have gone better! Your fine". At that moment, had I been able to talk, I would have screamed "Are you crazy, do I look fine, do I seem fine" I thought they had all lost their minds! They were nuts because the state that I was in could not be deemed fine! :) Not to me at least.

As I further woke up to realize what they were saying it brought tremendous relief and the tears flowed. I had been told, pre-surgery, that because of it's location and the fact that it was intertwined with several arteries, it would be impossible to retrieve all of the tumor. The risks were too great. Risks of stroke, of mental impairment. Risks that at the age of 30 I was not willing accept. So they (the medical team) had decided they would get what they could and that would have to be enough. But my mind now exclaimed "they got it all". The only way I could have been more pleased was if my head hadn't felt like it had been chopped of and sewed back on :)

I spent 3 nights in ICU and only 1 night in a regular room and I was discharged! I got to go home. To embrace my beautiful boys tighter than I ever had before! Everything looked different. Life had changed. What moment it did, I couldn't tell you, but it changed forever. I only wanted to get better as fast as possible so that I could enjoy everything that I had in store.

Quick did not come as I would have liked. Again with my 'altered' reality. Things have been slow. I feel great, most of the time, but I don't have a lot of stamina yet. They tell me "it will come, just be patient". That's the one thing I really struggle with...patience. I'm learning though, constantly learning. And when I do gain some speed, watch out because I don't think anything will stop me!

I can't say enough thankyou's for the unbelievable amount of praying that you all did. It worked. I came through, I'm myself again and they performed miracles in that operating room! I know that there is no way for me to ever re-pay the kindness that has been shown on my behalf but I will spend my life paying it forward!

I'm coming through and will continue to share my journal entries with you. I go back to the Mayo on December 30th to find out the pathology results (whether or not it's cancer, though preliminary results indicate it's benign) and find out what's next in this journey.

I had a brain tumor named Egore ...but he has now been extracted!

Wednesday, December 2, 2009

Francis Update

It just dawned on me (Lois) today that there might be people who aren't on Facebook that would like an update. Sorry about that.

Monday's surgery went very very well. She was able to be asleep during it! The doctor's told my parents that it could not have gone better. They removed all of Egore!!!! With most brain tumors, they are unable to get the entire tumor. We are so so happy about this. After she woke up from surgery she was in ALOT of pain, which I am sure is pretty normal. I cannot imagine my head hurting that badly. It took a little while to figure out what medicines work best with her also. Tuesday morning she was able to eat a little bit of grits and keep them down which was great. The rest of the day was filled with pain, pain and more pain. She had a good night Tuesday and today was able to sleep for 1 1/2 hrs straight Farris said. Which unfortunately is the longest she has slept in one sitting since surgery. Poor Frannie. She also ate a little more grits today. I forgot to mention that Tues and today she was able to walk down the hall a little bit with the Nurse and sit up in a chair for a few minutes. The last I heard this afternoon, she was supposed to be moved to a normal room as well, out of the ICU. We are really excited so far with her progress.

Again, I can't say thank you enough for the prayers that have been offered in my families behalf. I know that this is why she is doing so well. Thank you thank you thank you!!


My sister Farris and I are going to have an online craft auction soon to help with hospital expenses. If you would like to donate something, big or small, please let me ( or Farris ( know so that we can add it to the list and come up with a date to have the auction. If you don't craft but have something else to donate, we will take it too!! Also, you can be in ANY state and still donate something!! Thank you!!