I live!

One good thing being now retired is that I can read/write now thanks to completion to my "only way to do this is through doing the only option in radiation to be stubborn with my brain".  When a specialized doctors in brain-specialized really has been a pleasant position.

The end of everything thus far is both good and very crappy:

Good:  The source of my regrowth as been identified!
Bad:  They are "well-crap" that my very aggressive is from part radiation treatment from the past.

Good: No need for me to walk down the street.
Bad:  Seizures have hit any where from a couple days every week.  All it is vary annoying to me when I couple seconds "black-out".  However, I am glad my seizure is a nice zone-out from forgetting thing could be a lot on the worth level; having a lazy brain is okay to me!

Good:  I can now read/writing at about a 50/50 chance.
Bad:  I takes be about 2-3 minutes to read an sentence, but cannot remember in it my the end of it (my incredible husband is by read/writing buddy).

Good:  My husband can read minds!  He can figure out any missed from brain missing letters and numbers.
Bad:  To be able to say a full sentence as become by annoying to be.  Talk to me about every science in second, but after two of three sentences I can't.

As a sign of my current skills for writing/reading/talking skills, I am now done with last typing of an hour and a half.  If my current new brain tumor to the end of 2020, then a tattoo for the new rebelled tumor for as long as I can!

                               

Montana's in Texas! (Not just us)

     The other day Shannon and I spotted a classic car. While that's not incredibly unusual, what was more rare was the Montana license plate (Missoula)! I couldn`t get much on it, heavy traffic, but it was a maroon convertible, rounded shapes in the back and more flat in the front. It made Shannon very excited.

     Shannon is on steroids, which have returned a lot of her functionality. She's even complaining about my proof reading, to witch I say byte mi! Anyways, you may see her liking or even short responses. She can usually get a short sentence or a few words at a time. Some days are better than others, but she's overall much more functional.
     It is a double edged sword however, with her increased awareness of her condition she also is more aware of how far she has regressed. This can impact her mood from time to time. The bloating isn`t helping her self image either.

     Radiation began this week. Shannon likes how quick and accurate it seems. She describes it though like the creepy robot-alien from lost in space (the new one). It apparently is only millimeters from your face as it does its work.
     So far we haven`t had any serious complications, no noticeable swelling or neurological issues. The only current side effect is she can feel the heat on her skin like a sunburn. We've picked up some aloe, though if anyone knows something better let us know!

- PS - Murphy has replaced Shannon in judging my grammar:

Sudden development...

Shannon felt it necessary to let everyone know one of her fingers she cannot close fully and it twitches open if she thinks about it. To keep a sense of suspense I will not tell you which one. But should you see her, she's not trying to be rude, it's just how it is.

Seven doctors walk into a bar . . .

(Many thanks to my incredible husband for typing, lettering, driving, etc.  Please contact him to contact  me . . . my finally round of brain has made it literally impossible to read/writing/talking skills are headed off to bite the dust - Shannon)

        Things are not good for Shannon right now. Over the past two months she's had to quit teaching (the Texas school system is a nightmare to begin with), cannot drive, and her memory is becoming sketchy. Perhaps the worst part is her ability to communicate is being affected. She cannot read, write, type, or speak clearly. Most of the time she can understand words spoken but its about 90% right now. She`ll not be able to read or write this blog.
        Last Monday we met with our first doctor to try to assist with her cognitive issues, November she was able to teach, January she couldn't reliably form a sentence. A regime of vitamins and supplements were added. I noticed a small improvement, mostly in her memory, but her speaking became better as well.
 Early Wednesday we met with a small heard of doctors, assistants and others. We had an MRI done, followed by labs, then finally the consultation. One of the doctors-in-training did neurological tests upon Shannon, including testing her ability to speak, read, and move her limbs. Despite doing better than she had been, in my opinion, she started to have a mental breakdown during the exercises. I think she had been denying her condition to herself, but after failing so publicly, without me being able to cover for her it hit her.
        The MRI results are bad, we didn't take a picture, but not only is it growing in new areas, there are little spots that are also growing away from the primary tumors. The one growing in her language center has slowed, but it is again greatly displacing her brains shape. The doctors at that meeting were less than optimistic, their best seemed to be do radiation and take pills. Neither of which have had a track record of great success. The one good thing that did come from that consultation was getting Shannon on steroids to reduce swelling. That has improved both her cognitive functions as well as her ability to read and write. She was able to write the first paragraph with only some help. Lastly they recommended seeing another doctor for radiation assessments.
       Friday we met with the radiologist, the doctor did recommend a course of radiation, it has been several years. I have my doubts, they didn't seem to do much before, and this would be a significantly less powerful version. We also wanted to speak with a surgeon, the tumor on the MRI seems predominately on the outer side of the brain.
       Later Friday we saw a surgeon who was, to our surprise, not on the autism/Asperger scale. She was very nice, friendly and empathetic. She also did not recommend surgery as the first option. I was a bit disappointed, I had hoped that they could do some testing to see how much her left side is actually doing, and see if a large scale removal would be possible. Neither are, not without very significant risk. She did however suggest that after radiation, they would see if any areas are still growing, and if possible they will use surgery to remove the ones not responding to the radiation. 
       So the plan is radiation, followed by avastin pills, many more MRI's and possibly surgery. 

       Shannon is not doing well mentally. She`ll deny it, but with realizing how bad her condition has degraded, having 2/3 doctors be less than positive about a prognosis, and not having the energy to fight has made her emotions very irregular. She's afraid, and there's lots to fear.

       Doctors didn't give much reason to hope, she could be gone in the next few years, or it could be the next few months. I`ll try to keep everyone updated, but I`m already taxed being both brains. Shannon is also exhausted frequently, cannot read, and doesn`t trust herself to speak. If you call and she doesn`t answer leave a message. Otherwise I`ll try to read any messages to her.
        

Highway Shakespeare

If you did not know already, my husband and I decided to take a trip to permanently settle ourselves down in Texas to be closer to family.  This drive down through five states (it would be a weekend jaunt through the east coast), turned out to be a memorable experience; let the destruction of Shakespeare begin!

Day One (Hamlet – to be or not to be, driving is the question):  

Originally, we were supposed to be leaving our house in the morning when the hired driver of our trailer arrived.  Unfortunately, this was our “to be or not to be” (thank you Hamlet).  The intended time of being the latest at noon, turned into arriving four to six in the evening.  At six o’clock we were finally able to leave and start our own drive.   We drove until ten-ish o’clock, and stayed at a feline friendly hotel.  Needless to say, Murphy the cat was very comfortable in the car, slept the entire way, and returned to sleeping immediately on our arrival in Billings, MT.  Cat life is clearly difficult. 

New discoveries on day one:

1   -   You can be pulled over for speeding when you are not paying attention (want to make a guess who?).

Day Two (Othello – where the end of this trip t’is neither here nor there):  

Long day.  Really long day (hello Othelo!).  Trying to make up for the shortened day, we made it our goal to travel twelve hours without going to crazy.  It is was a marathon, with use finishing our drive through Montana, Wyoming, and Colorado.  We survived (as well as the sleeping cat), awarding ourselves with a nice and unhealthy late dinner at a Sonic. 

New discoveries on day two: 

1    -  Murphy the cat discovered the coolest location in the car in underneath a seat where the air conditioner hits him directly.

2    -  Wyoming takes to cake for being much more beautiful then Colorado.

3    -  Young antelope are adorable.

4    -  Denver, CO traffic is worse than Texas.

Day Three (The Tempest – the location of where spirits do not melt into thin air, only angry wind):  

We made the universal decision that we were going to not go too crazy, and extend our trip by a day.  Our drive continued through New Mexico and the beginning of western Texas.  We enjoyed stopping off at some state parks, relaxing, and learning all about the wind speed caused by oncoming storms.  It really makes staying on the road more of a challenging “adventure” then a relaxing expedition. 

New discoveries on day three:

1     -   A husband can be offered a new job in Texas when you are driving in the middle of nowhere.

2     -   Semi trucks pushed to the middle of the road thanks to the wind putting them there really gives you a burst of adrenaline when you are passing them.

Day Four (King Lear – we survived going hence, even with highway tolls coming hither):  

We survived!  A miracle occurred and we made it all the way through the nice and flat region of western Texas with nothing insane occurring.  This event continued when we made it through multiple highway interchanges without getting lost.  We were able to sign it all for a six-month apartment, and were able to move in with our one week “survival kit” until our full round of clothing/kitchen/bed/furniture arrives.

New discoveries day four:

1     -  Success in Texas is a possibility.

2     -  Arriving on a Friday really does not help with trying to make all the calls for services; this might be the one time my husband and I were not looking forward to the weekend.

3    -  Folding chairs work really well inside.

4   -  Texas must make a fortune of Texas newbies and the toll on highways.

'O, that infected moisture of the Texas heat! Thank you to Shakespeare in your own Lover's Complaint, you made sure to keep all of our days open for discussion.

One more year survived as a tumor recipient

Well, it may of cost another round of allergies, but a year has passed since my last brain surgery and a month since being knocked out for a couple rounds of oral stitches.  Needless to safe, I've survived both, and am still up, alive, and enjoying being the odd-ball person with cells with corresponding miracles that have allowed me to live another six years.  I am very happy that being stubborn with the odds has worked in my favor, with no sign of my obnoxious skull fellow being present.

The big event the end of last month was the removal of some of the material from the roof of my mouth.  It was then attached onto the gums on the left side of the mouth to repair the damage caused by radiation treatment.  I happily paid extra to be knocked out during the procedure; I have no idea who would not be completely okay with being awake while parts of your mouth are peeled away to be reattached.  That takes the cake away from me for saving money.

Well, either way, in the end I did survive the surgery and the resulting three weeks of eating baby-friendly food of Jello, overcooked noodles, mashed potatoes, and apple sauce.  You can rest assured that my "adventurous" meals were met with much . . . excitement.  As of Wednesday my visible stitches have been removed, with my smaller, move "under the skin", stitches still hanging out waiting for their removal in a couple weeks. 

Time to make this story a more humorous by provided a picture story of my food consuming weeks since surgery:

Week 1:

Tasty, with extra canned fruit mixed in every day!

Week 2:

Potatoes are a staple of life, if only they could be fries.

Week 3:

Soup, soup, all the way, liquid textured noodles for the rest of the day.

Last, but not least, to enjoy the current Week 4:

Non-crunchy food, here I come!

Time to eat to get the hang of eating squishy and dissoluble food for a bit longer; three more weeks until the last (knock on wood) stitches are out!

Last full meal of 2018

Well, my fancy seeking brain tumor is still a no-show!  I'm afraid that having a tumor that really wanted attention did not get what he wanted of slowing taking over my brain and turning me into a migraine-infused semi-human.  It has now been six years since the initial discovery/surgery/radiation/chemotherapy back towards the end of 2012.  I am all of the death of thinks living where they are not supposed to.

Unfortunately, due to the radiation that I received to treat the tumor in my head, I am now up for my next run of surgery, this time in my mouth.  The cell killing radiation not only took out my hair on half the left side of my head for a Trump comb over, it also killed off some of sections of my gum inside the left side of my mouth.  As a result, I get a "lovely" oral surgery tomorrow to move, stick, and transplant my gums around to fix the damage.  Being as I am not a big fan of being conscious during a surgery, I am paying extra for them to half knock me out via IV to make me into a semi-conscious zombie.  Since I will be unable to eat regular food for a bit, I made sure to eat some terrible for dinner today.

There is nothing quite as good as good leftover pizza and Coke from a glass bottle.  If nothing else, I'll get to eat plenty of Jello, pudding, and yogurt for a few days.  Here is my positive math problem for the week before I head back to work after Christmas break: 

oral surgery + no Christmas leftover food + Jello = eat less calories!

Who knew that having stitches inside your mouth could help you eat less terribly unhealthy holiday food?