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Latest journal entry MIGHT be as cool as it sounds!

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SHORT STORY: MRI unchanged, pursuing more information about Cyberknife radiosurgery.


July has been BUSY.

I've returned to work. It has been mostly great to be back. The first couple patients I cared for reminded me how much I love my job. I do desperately miss my baby at about hour 9. I am so fortunate to be able to work part time. We are also SO fortunate to have a nanny that is simply the best. It makes working easier and more enjoyable. We love you, Laurie!

With my return to work, it's more than the, "How's the baby? Are you getting any sleep?" It has been a lot of questions on what is going on in this BIZARRE brain of mine. Muahaha, if you only knew!  :)  Really, it is a great problem to have. This work family is unlike ANYTHING you have ever seen before. Sven even said, "you must think my coworkers are cold, heartless beings".  Hardly, but my work family has been integral in helping me through this. The negative to this is having to rehash and think about what's going on a lot more than before, like every single shift I work.

This brings me to my general newfound feeling of really realizing how much I took my health for granted. My "problem list" on my medical record has grown, quite significantly in the last 3 years. That is hard to swallow. 

July also has brought some time in South Dakota seeing my parents and my bestie from high school. I'm not sure I've done much else other than change a lot of diapers and feed constantly. :) A 4-5 hour chunk of sleep would be delightful.

I had my follow up MRI the 3rd week of July. The wacko I am, I asked for the disk before leaving the imaging center so within a matter of hours I was able to see that the tumor was at least approximately the same size.

The report confirmed no measurable growth (remember in 3 months time on something that I've had my entire life).

The week following the scan, my amazing parents came up to help with the girls while I worked and my dad attended the consult with the neurosurgeon who performs/specializes in Cyberknife radiosurgery. 

My impressions of this doctor started off strong, she plopped approximately 4 journal articles on radiosurgery and epidermoids in my hands before really saying anything. She must know my love language. RESEARCH. This appointment could be a book in itself so I'll try to sum up the big points. 

-I am a candidate for Cyberknife, but that is not based off any research. Not only are epidermoids rare, but radiating them is a very new concept. I am not sure I would go as far as saying it's a treatment, but rather a method of controlling growth or stabilizing the tumors.  The case review articles she handed me collectively include probably less than 20 patients that received radiation for their epidermoids. Great, right? The doctor said on a number of occasions, "in treating other benign tumors, cyberknife seems to...".  Aka - I'll be a guinea pig of sorts.

-The doctor referred to my tumor as "rather large" a number of times. As a health care provider, I am becoming more and more aware how and what things are said that patients remember and cling on to. I can still hear her voice saying "rather large".

-She said that a couple millimeters of growth could really change things for me. Millimeters!? It's approximately an inch. 25.4 millimeters is an inch. Divided by 33 years. 1.29 millimeters a year in growth. Um let's do something yesterday. Yes, this is truly how my brain works. 

-About to drop some knowledge on ya. The ventricles in the brain are what create cerebral spinal fluid (CSF), this fluid bathes the central nervous system in crucial fluid (brain and spinal cord). The flow of CSF starts by leaving the ventricles through a very narrow tube called the aqueduct of sylvius. My tumor happens to be already ALMOST occluding that tiny pathway. Once that tube is occluded or likely any more occluded, I am in trouble. Something has to be done. This is where that crazy "hydrocephalus" comes into play. Google it. So the doctor that said sit on it and do nothing, probably knows that something will have to be done sooner than later but doesn't want to freak me out.

-Cyberknife (at face value from this doctor), doesn't seem to have significant risks or side effects (in comparison to inevitable open brain surgery). It almost seems too good to be true. This is where my unwavering need to research things to death (too soon?) comes into play . I haven't had a lot of time this week to process the appointment, but I do know that my next steps include researching Cyberknife risks and long term effects until I can fullheartedly believe this doctor.

-She wants me to see the radiation oncologist to answer more questions and further my potential treatment team. Scheduling that will be in the works soon.

-We learned more about the process of Cyberknife, but I will include those details if we decide to move forward. Are you sick of reading?

-2 tidbits that I found fascinating. I had a C-section with Margot which included a spinal anesthesia. I had a bizarre (my favorite word) reaction to the spinal all of us brushed off, but after the tumor discovery, bothered me. My heart rate dropped to the 20s or 30s. This is not normal.  Blood pressure commonly drops, but heart rate increases. I almost passed out. This doctor confirmed my suspicions and totally explained why this reaction happened. It's because of the stupid tumor. I'll spare you the medical explanation.

The other tidbit includes discovering that the tumor is compressing my cerebellum to the point of my axial balance being off. Try this: Stand up normally, arms at your sides and close your eyes. You should mostly stand still, a small amount of movement to correct for balance is normal. Mine is not. Every doctor has done this check on me, every time I've swayed almost instantly, almost to the point of me opening my eyes because I feel like I am going to fall. This doctor explained why and explained that it's NOT NORMAL.

OK I am really done now.

The next post will include my research/case review findings, hopefully a plan to meet with the radiation oncologist and potentially me making a decision if this option is for me.

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