Wednesday, July 15, 2015

The post I did for me. 3 months, 2 surgeries, 1 atypical meningioma

April 15, 2015 

This morning I came to school with a major headache and difficulty with speech. A co-worker took me to the ER where hubby met me. They did a Ct scan and then this MRI. Impressive picture huh? Quite honestly I had an episode Sunday and one a month ago. They were short-lived, I shrugged them off. 

This is a 6 cm. meningiona on the brain. It is most likely benign (they will find out for sure when they take it out) and probably been slow growing for awhile but it is pressuring the brain now. I will have surgery for tumor removal in the next two days. Most likely when I wake up here in this fine facility. I'm kind of a big deal around here and they are moving surgeries around. wink emoticon

I have every reason to believe this will be a successful surgery sending me on a 5-6 week recovery of the brain repairing itself with this tumor and absence of this tumor. I am honestly most devastated about abruptly being done with this school year frown emoticon That just the way my cards are dealt right now, I have accepted it.

My in-laws are at the house taking care of business. You have all been wonderful with the offers and fights over who is going to get my kids. It was quite amusing actually. They are most comfortable at home with the in-laws and favorite in-law dog Dixie. They retired just in the nick of time.

I love and appeciate you all. I have a HUGE network of family and friends that are all UH-MAZ-ING! Talk to you as soon as I can.

April 16, 2015  Surgery

April 17, 2015 couldn't talk, walk or read. Practiced saying one syllable words. 
April 18, 2015 practicing reading pete the cat books, practicing saying 2 syllable words

April 19, 2015, lots of visitors, lots of talking and walking

April 20, 2015 home 

April 20-30 was a blur I went to speech therapy, graduated from Pete to Cat to Gone Girl and we waited for pathology. 

April 30, 2015 Staples Out 

Good news today! Last Friday we found out that the pathology report said my tumor was a Grade II atypical meningioma. That wasn't the best news so we've spent the week processing the fact that this will most likely come back. Yesterday the tumor board went over my case and today we found out that there were only a few atypical cells and they consider it borderline Grade I/Grade II but closer to Grade I/Benign. That means no radiation needed at this time, it most likely won't grow for many, many years (10,20,30 years if all). I will get MRIs in July and October and if everything looks good April 2016.

I however will not be able to drive until July. Rides to the pool will be needed.
May is brain tumor awareness. I'll be learning and sharing a lot about brain tumors. Education is power.

May 2, 2015 My Birthday 

Well I've had a good 38th birthday. It is so funny that a month ago 38 seemed so old and for the last two weeks doctors have been saying you are so young......They are right. I feel I am recovering well, like a young person. So that is good news. One more birthday in my 30s and I'll take it!

May 3, 2015  Working on my short term memory with my helper 
May 4, 2015 

6 speech therapy sessions down, doing good, no rain yet and left behind staple removed today. Good day.

May 7, 2015 This may have been one of many mistakes 

I was naughty and cleaned this corner up. Don't tell my doctors. Time for a nap.
Learning to let go and let God (and the 7 year old)
May 9, 2015 Getting out of the house, J's dance competition, bright lights, loud sounds, and a breakdown 
May 10, 2015 

3 week update. Aphasia is almost gone. I occasionally struggle for the word I'm looking for but I can hold a conversation with people I'm comfortable with. I'm still working on all the things on the brain graphic. That is a very good graphic and hit home. I can control one of those things at a time but not two, otherwise known as multi-tasking. So what do I do to work on those things? Get out of the house in short doses. It feels good to be there and I natural have those opportunities with dance, softball and my nieces' graduations. Bring it on! I'm ready.

May 17, 2015  My nieces' graduation

My mother and I at graduation.  My mom is fighting lung cancer.  I only needed the scarf because it was humid and windy.  My scalp was too sensitive for a ponytail and my sensory issues were whirling.   The purpose of the scarf was to keep the hair out of my face. 
May 20, 2015

Week 5 update--
#1 I finished Gone Girl!
#2 I put my glasses on for the first time my stubborn ear is healed!
#3 I tried 2 new hair-dos that worked and do not bother me!
Good day.

May 21, 2015

5:00 cup of coffee to get me through softball, whatever it takes.  (At this point I was going to my daughters' softball games 4 nights a week)

May 22, 2015

Visited my 2nd graders on their last day of school. 

May 23, 2015

Trip to amusement park.  I was able to go on the ferris wheel, train, and this ride.  I could've qualified for a  disability discounted ticket but I used an educator's discount.  They are equal. 

May 24, 2015 

Still in speech therapy, started lumosity and brain baseline app

May 28, 2015

6 weeks. I could go to work today. Thankful that I have more time. Fascinating brain link. My damage is in the frontal left. Every day is better, every day finds a new challenge, every day I attempt to conquer it.

June 3, 2015

Officially met my speech goals. Assessed in the normal range and graduated from speech therapy! Moving on to the rest of the summer. Good day.
 — celebrating success.

June 6, 2015 

Celebrating with the hubby.  Wonder why his drink went down so quickly? :)

June 11, 2015

8 weeks --Today I discovered I'm like a flower. I thrive with rain. You see when it is sunny and nice a want to go, go, go and when it rains I sleep, sleep, sleep. Sleep makes me thrive. The rain is welcomed today.

June 14, 2015

Bittersweet--The meal train ended tonight and even though I will miss all your wonderful meals we are at the point in recovery where we need to cook again. At first I wanted to call all you enablers . wink emoticon 8 weeks of meals! That is craziness! But then I embraced it, loved it, and realized we really did need every last bite. I really believe you all are the reason I am doing so good, every gesture little or big has helped me. I keep getting asked what do I need. I am doing just fine at 8 weeks and can hold my own, we still have gift cards and a deep freeze of frozen meals. I'm still not driving but rides are even being taken care of too! The girls and I are enjoying a very lazy summer and it has been wonderful! The b word (bored) has not been spoken of yet and I have learned to slow way down. So thank you from the bottom of my heart. I will be using all your actions of kindness and paying it forward as I can. You all have a place in my heart. ~Amanda

June 24, 2015

It has been 10 weeks and I feel amazing. I no longer have an excuse to not exercise. Darn. unsure emoticon This is looking back on Day 1, the day of surgery, recovering in ICU. I was full of thoughts and could not speak. I could kind of write and some of this was just trying to spell. I could spell Alan but I have no idea who is Blain is? I think that might be me trying to spell Ryan? I know I was having a ton of trouble with R's and couldn't say Morgan so I wouldn't even try to spell J or M even though I was saying their names along with R over and over. Under that I was trying really hard to spell Thompson. I finally gave up and did it the next morning. Tried to write the abc's but gave up at e. But don't worry. I could spell vodka! Oh the wonderous thing that is our brain. At 10 weeks, I can already laugh at this. ‪#‎blessed‬

June 29, 2015

I asked to be seen because my head felt like a waterbed, sloshy.
"Saddle up and Warrior on!" ~Quoting Renee Baio
Going for a MRI ride to get questions answered. (Don't ask any because I don't have answers) Send prayers and positive thoughts! —
 — at University of Nebraska Medical Center.

Mri done. Hanging out here for the night. Answers and decisions tomorrow. Thank you for the prayers. Good night.

June 30, 2015 --Another surgery to fix dura tears

My surgery is over. Doctors removed fluid and fixed some leaks from the original operation. I should be good as new soon. Hopefully home Thursday.

July 1, 2015 

I'm out of ICU. I'm not gonna lie. Yesterday was a kick in the pants. Not as hard as the first time, but not easy. I'm up and walking. J is at Grandma and Grandpa's and R and M are having fun with me.

 July 2, 2015

Going home today. Thank God it is summer and relaxing time. We will be fine, no help needed. My recovery is not as intense as last time. I figure if I power rest for a couple of weeks I'll be fine. After all they didn't go into the brain, just under the skull. So that is much better. wink emoticon

July 3, 2015

Update 11 weeks or week 1? I guess I'll just start over. All the brain issues from the first craniotomy have resolved so I'm going to start with week 1, 2nd craniotomy. Small step backwards but not huge.
Week 1 update-On Monday I called the Dr. about some swelling that I have been having. I was seen about 1:30, I got a bed at UNMC around 7:00 PM and they sent me in for a MRI about 9:00. The MRI showed that the tumor is completely gone still (yay) but I had a CF leak which they said they rarely see (#1) especially where it was pooling (#2). My neurosurgeon wasn't able to see me until Tuesday morning. Then he said that I had two choices (1) I could wait and see if it absorbs or (2) he could go in and see what is going on. My heart and head where saying two different things. Thank God my head overtook my heart and said go back in, so they started surgery 10:00 on 6/30/15 That means they had to reopen me, open the bone (easy peezy, I have screws) and check out the dura. Turns out there was a tear in the dura and they patched it up. If they hadn't done that I would've ended up with an infection which luckily I had no signs of.
Since they did not go clear into the brain I am not dealing with all the brain issues that I had previously but I am dealing with wound healing issues. Here I am 3 days later, already at home, in a little pain (wound is tight, they were thorough) and eye is swelling slightly (normal).
I plan on power resting for 2 weeks (no visitors please), I have a follow-up check-up then and will return slowly to normal life, I'm still due to be able to drive July 15, returning to work in August and believe me I can't wait to go back.
The only thing I ask from you is to have an amazing summer, and have a drink for me! Feel free to take my kids to the pool too. wink emoticon Love you all!

July 8, 2015

Week 1 update- I'm moving from bed, to chair, to desk, repeat, repeat. I am being careful not to bend, lift, or do much of anything. So I have started on school work or work work via the computer. Mental I am back to normal. Physically, well I'm being careful. No more dura tears or leaks please.

July 13, 2015

Getting these bad boys out tomorrow! — feeling excited.

July 14, 2015

2 week (12 week) update--Staples are out! Everybody is happy with the outcome and agreed that going back in, and patching the dura tears, was the best thing. Dr. Surdell referred to csf fluid as a neurosurgeon's arch nemesis. It's a complicated thing. He cut really close to the dura in order to get every tumor cell out and he is confident that he did so. He seems genuinely disappointed that it happened. I am just happy I am so much less sloshy than the first time around. I do not need to come back for 3 months unless something else goes wrong again. Going forward I will have MRIs in September, December 2015 and then if all goes well June and December 2016. The ultimate goal is to get to once a year MRIs. He says he is OCD about follow-up and this is to assure that no regrowth is happening.
 — feeling relieved.

July 15, 2015

It's been 3 months and I'm driving! We had a dance party in the car on the way to Wal-mart! Bought all our school supplies except for Jenna's plastic pencil box. Wal-mart does not have them!! ‪#‎itsthelittlethings‬

And that brings us to date.
Some additional photos...

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