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​CANCER CHRONICLES

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Where Oh Where to Begin...

2/15/2020

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Here's my attempt

I've attempted to think of words for over a week and still not quite sure how to put anything to words. As you know, I started this blog right when I got diagnosed with cancer in 2017. Since my type of cancer is "rare" there wasn't much to google (and you know that's the first thing anyone does when they are diagnosed with something, especially that's supposed to kill you). I wanted to know people's stories, experiences, and get information of what I might endure. There was really nothing, which is why I wanted to chronicle my journey for anyone else that came after me wanting to know more. 

I'm not sure how my cancer journey that was supposed to be personal, positive, and informative ever got turned around to be used against me negatively, but unfortunately that's exactly what happened and I was blown away.

See, I was over the moon to finally try to leave cancer behind and start my life over getting back to work and my passion of teaching. As you may have remembered, before school even started I was "made aware" in the administrators office that calls had already been received not wanting their child in my class and the c word was brought up. Again, speechless. These people hadn't even met me or gotten to know me, much less seen me teach and do what I love, but to each their own. So, I got to embarrassingly stand in front of 40+ parents at curriculum night with the first words coming about of my mouth being I was told some parents didn't want me to be their teacher because I was a cancer diagnosee, but that I had finished all of my treatments over 2 years, felt better than ever, and was beyond excited to finally get back to what I loved to do and was fully capable in every aspect (or I wouldn't of interviewed and been hired). Put yourself in my shoes and think how humiliating and unethical that is. Regardless, I got the elephant out of the room and kept on chugging along with my normal shpeel of information seeing as though this wasn't my first rodeo and I wanted them to see that. With a bright red face and sweating bullets from how the presentation started, I finished not caring who the parent/parents were that were the ones who called. I was going to teach no matter anyones concerns, and which I wish they had seen me face to face to talk to me or raise their concerns before calling about me and before even seeing me fully healthy and capable and just trying to get my life back.

I thought for sure these issues would subside and slowly fade away, however, they didn't. Week after week I was called to the office with some crazy or absurd comment or concern from admin they received or were worried about. ALL of my personal social media has always been PRIVATE, but yet someone had hacked their way in and stalked all they could to send administratration with yet more concerns. Now, if you read my blog you are more than likely friends with me on social media, I have never posted anything negative or in the wrong by any means, but yet somehow my words kept getting twisted and used against me. If you know me, and if you are in education for that matter, you know that if you don't have a sense of humor you will never survive this career. Apparently my humor or jokes were just another thing to use against me. Really?! So at this point I deactivated my class blog, personal (and private) instagram, and cancer blog in hopes these crazy situations would end because I just couldn't handle much more and what was being asked of me in return (which is a whole other issue and topic). Once again, my hopes did not come to fruition and I continue to get the most strange concerns when called to the principal's office weekly. Had I known this was going to be the situation for so long I would have gotten my lawyer and teacher advocate involved a long, long time ago instead of continue to endure the relentlessness alone and feel more and more secluded, bullied, and quite frankly (in my opinion), harassed and discriminated against. I'd go to my therapist in tears and tell her everything and she would be just as blown away as I was, and seeing as though she used to be a school counselor in the same district she knew all too well the happenings that went on. I also told my oncologist what had been going on who again, was just as speechless as me and commented, "what do they think, you're going to give them cancer or something?! If that were the case I'd have cancer!". Needless to say, the emotional toll it took on me was far more than anyone should handle. My passion was dying because of these sad and unfortunate continuous issues that were beyond ridiculous. Fast forward to January and I had just had enough and couldn't take anymore weekly principal meetings, ridiculous situations and things that were being given and asked of me....so this is when I contacted help. 

Now, obviously I am the LAST person that needs to be without an income or medical insurance...but hopefully that just gives you a better understanding of how bad the situation got.....my therapist even called it "toxic" which I would completely agree. I didn't want to leave my kids. I didn't want to leave my amazing parents (99% of my class parents....although I got in trouble for using that percentage too even though mathematically you'd never use 99% for a class of 22).
Before cancer, I kept jobs for YEARS, after cancer I felt like I was just hopping around because of everything cancer puts you through. I am the last person that quits or gives up, but this situation had gotten too much. Thankfully, my lawyer wrote my letter to the superintendent to be released from my contract so I could resign with no negative ramifications on my teaching certificate IF I chose to stay in education after such a bad experience. Thankfully, this was granted. I felt horrible for my amazing parents who were so supportive, sending me messages, going to admin, going to the superintendent, wearing lime green ribbons on the kids backpacks and shirts, and even our beacher shirt for picture day. They were at a disadvantage too, but thankfully had seen first hand the issues that I wasn't even aware of so it wasn't just my word against someone else's. 

I had less than a handful of days to yet again pack my entire class up, load it up and bring it back to storage (my family are moving pros at this point). It was hard, physically and emotionally. I would be taking things down and the team would be putting things right back up so the classroom would be ready for the sub. It just didn't feel right on so many levels. Not to mention the kinder team shouldn't of had to be tasked with having to set the room up on their own time for the long term sub coming in which made me feel even more horrible, but again, that's a whole other story.

Now, I was made aware by several parents who the "perpetrated" were and what all had been happening behind my back since before school started (oblivious to me) and I was still just in awe. Let me just point out, NO  ONE IS PERFECT....we all have a junk drawer you don't want anyone to accidentally open, we all have days you just leave dirty dishes in the sink because you are too tired to clean them right that second, or  a playroom you just can't motivate yourself to clean the toys for the 12th time that day......we all have "ghosts in our closets" that you don't want anyone to know about. Before you go digging in someone's personal life
(who not to mention is there to make a positive impact on your child's life), look in the mirror first, we are all people...with feelings! No one is perfect so before you go trying to degrade another, put yourself in their shoes first (although as we all know, that's impossible). 

TIME FOR MY SOAPBOX

Cancer = a financial, mental, emotional, physical, social death sentence....even when you live through it. I just hope no one else has to ever go through any of the situations I endured, cancer or no cancer, treat people with kindness, never assume anything because I promise 99% of the time you will be wrong and have no idea what that person's been through or going through. Don’t judge. Teachers obviously don’t teach for the minuscule paycheck they barely get by with month to month yet they still do so much more than you’d ever believe. I’m not saying I’m a phenomenal teacher by any means or trying to sound egotistical, but this society is losing great teachers and it’s because of parents/administrators/district/government laws etc NOT the kids or the poor teacher pay (we knew what we were getting into financial wise when we chose this career path). 

I had to share this video below....holy moly, she hit the nail on the head. I feel like that's been my life story since August and feel her pain. What courage this amazing woman has to stand in front of the board and make this speech! If only more people knew the truth.
"Just because you can, doesn't mean you should"...
"Disrespect in an uneven power dynamic is bullying"

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Starting Over.....Well, Attempting....

9/29/2019

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Caution...long post ahead 

I went back to work....bittersweet. I'm also using this as my excuse for not updating in way too long. As for medical updates, November will be my one year anniversary since my CAR-T therapy (crazy, I know). I will be having my 1 year post scan in January since my insurance starts over in a month and that just wouldn't be smart to do it now but to just wait a few more weeks. I have felt "great" in comparison to the last two years and really never thought feeling better again was going to be a reality. Nonetheless, my ninja t-cells are apparently working and hopefully continue to (fingers crossed).
So, going back to work....where oh where do I even start. When I wasn't able to work during my 2 years of treatments all I wanted to do was go back to teaching and be in my classroom and loving on my kids. In fact, that was one of the hardest parts as I always mentioned. Then it happened. I got a job, teaching my favorite grade, with a shorter commute etc...however, all the amazing hopes and dreams I had envisioned going back to work crumbled pretty quickly.
First, the best part would be my body has actually taking it pretty well physically. I don't get tired and can't breathe etc like before, the only downfall (but this is for any teacher) is all the fun germs and loveliness kinders share with you so I was sick for the first few weeks of school. Obviously, nothing I couldn't handle given everything else I'd been through. Setting up my room took a little bit longer just because I had to take a few more breaks than before, but other than that, my body held up. I wont say moving my entire classroom from my storage unit and into my classroom to then organize and put it all up was an easy feat by any means (and still is a work in progress) but it got done the best it could in the time I had (and thanks to some family that just love for me to put them to work).
Now, I did get a job in the grade I wanted etc...however, it's in a new district, which means a new school and new team. This has been a much harder transition than I ever thought. The differences in district policies, requirements, and in general how things are run and managed has been eye-opening and really blown me away (and not in a good way). It's hard starting over after cancer no matter what you do. It's hard starting over teaching after being out of the classroom for 2 years. It's hard starting over in a new district and with a new team. All these "hards" have been a struggle for me. I used to love teaching...that's all I ever wanted to do and (ego aside) was pretty good at it. Now, I don't get that feeling too often which makes the whole situation even harder and just plain sad and depressing. I'm lucky I dont/havent had to deal with any limitations as of yet with my body readjusting, but my emotional state has definitely been a roller coaster ride. 
I feel like what I am about to mention is something I probably shouldn't knowing that in some shape or form it could be used against me later in my career path...but I also think it's important to share to give you just a little glimpse of what I've dealt with, how some people still never cease to amaze me, and how it just makes the whole situation even harder.
I had been working my behind off everyday allday, nights, and weekends preparing my classroom for meet the teacher night. Keep in mind, these parents haven't even seen me nor met me in person yet, however after finding out I was going to be their teacher multiple parents called my schools principal saying they didn't want their child in my class....because of cancer (which I am sure was said in a beat around the bush "nicer" terminology but that was the bottom line). All three people on our admin team called me in that morning to let me know so I was aware etc, which I was appreciative of, and also let me know that they supported me and that these requests were not going to be validated. Nonetheless, I saw it coming. The whole day while continuing to get my room and self ready for meet the teacher night I went through all the emotional stages: surprise, anger, sadness, speechlessness etc. These parents had looked me up online (like most do...teachers do the same things with students) and saw on my facebook one of my about me lines said "cancer fighter", as well as this cancer blog coming up. Now, I could completely understand if you actually met me first, I was peeling over dying and couldn't do my job and you didn't want me, but obviously this wasn't and isn't the case and I  wouldn't have 1) interviewed to go back to work teaching if I didn't think I could do it and 2) be hired as a teacher if I wasn't qualified for the position or looked like I was dying. So, this basically just started the year off negatively and it's been really hard to adjust. I obviously just acted like my normal self at meet the teacher (not knowing who 'said' parents were) and did everything as I normally would. 
Fast forward to curriculum night, the night where parents come to listen to you "present" what you will be doing that year, about yourself and your experience, and answer any questions they may have. I knew going into this I was just going to have to bite the bullet, address the elephant in the room and get it over with. So that's exactly what I did. I said I was made aware some parents were not wanting me as a teaching because of my cancer diagnosis, but assured them (as they could see looking at me) I was physically able to do my job and to the same level I have taught every other year. The rest was kind of a blur since I was nervous and sweating like crazy and you could hear crickets in the room, but I said what I felt needed to be brought up to hopefully 1) show those parents who called asking not to have me that I was aware and as they could now see in person and after meeting me I wasn't on my deathbed and 2) letting the other parents know who weren't the "callers" the situation. To be honest, I was already going to bring up the C word during this night before knowing about the calls, but I was initially bringing it up because parents will always think what they want about why I have a 2 year gap in my resume (no I didn't have a baby and no I didn't get fired) and to jokingly bring it up because I knew the first half of the school year there were zero chances of me having a good hair day because I had no clue what to do with the crazy new hair/mop on my head. It was meant to be a way to bring up the fact in a humorous way and move on along. So, I've still had some emotional issues with that whole situation from before school literally even started. I will add, I had a handful of parents come up to me afterward or write me telling me how sorry they were that that even happened and how embarrassed they were of some people's actions. They also brought up (which was and always will be my opinion) that knowing what all I've been through they wanted their kids to have me because it just shows you how much I love teaching, how I didnt give up, how I will always teach my kids that no one is perfect and all I cared about is if they did their best (this has been my Beacher teacher motto from the first year I've taught and if you ask any of my students they will tell you I say it all the time and they know it's ok to not be perfect...no one is, just do your best). I could never imagine even saying I didn't want a student in my class because they had cancer, or were autistic, or had any other physical or mention challenge or different than someone else (not to mention lose my job as someone would deserve thinking that way)...it's not like we wake up one day and say I hope I get cancer. Everyone deserves to be treated fairly no matter the situation because 9 times out of 10 that situation wasn't chosen by the person. And on another note, I can almost guarantee the "callers" have known at least one person with cancer in their lifetime...would they tell them to not go back to work....would they tell them no one is going to want to work with you/ have you as their educator/employee etc?  I feel confident in saying NO, they wouldn't. Cancer or no cancer, you have to keep living your life. Ok off my soapbox for that topic.
Next is the struggle to build a new normal. When you have/get cancer you never get your life back...not a single part of it, literally. You have to build everything back from scratch, brick by brick and day by day. It's not easy. It's not joyful. It's not cheap. It's the hardest thing you'll ever have to do, even harder than the cancer itself. You feel like you're in a hole you will never be able to dig out of. But you keep going, what other choice do you have? I loved teaching at my old school and district. The entire staff was like family. I met (and still have) some of my best friends from working there. You wanted to go to work everyday, not only to see your kids and teach, but to be around a positive group of people that knew you inside and out, supported you, and were there for the good, the bad, and the ugly....because you did it together. We were one. We were a family. That's what I was looking for in finding a new job going back to teaching because I know how important of a piece that family and friend feeling truly is. You always hear about "teacher tribes", well it's true. This is why so many teachers are leaving education (obviously amongst many other issues) but if you don't love going to work everyday and have that connection of who you work with in teaching and support, you just won't survive. Teaching is hard enough, but not doing a part of a "school family" changes the entire puzzle....because being a family is literally the main piece. Am I saying I have horrible people on my new team? No, not at all. I have great people on my new team. The problem is, there are 9 of us. I learned very quickly it's very hard to be collaborative and cohesive with such a large team...I dare to say impossible on top of you're just not given the time.
I am also the only new person on the team, this makes it even harder. Everyone else knows what they typically do every year, how they do it, when they do it, what's expected etc. Now, on a side note, we have a tough group this year so everyone's plates are already full. I was just very overwhelmed going from, what I now know is a needle in a haystack, to planning every subject on my on and being every straw in the haystack. Thankfully, this is slowly getting better, but again, it's just incredibly hard with nine people.
Finally, being in a new district. AISD has literally blown me away with all the testing (specifically in kinder) that needs to be done and of course all by a deadline. To average it, the accumulation of all the testing I have to do one on one takes almost 2 hours a student...multiply that by 22. Who exactly is teaching those 22 while I am testing. What exactly are they supposed to be doing to keep their 5 year old attention for longer that a few minutes not to mention quite enough for the one I am testing. It.....is.....impossible. I literally had to put in for a sub tomorrow to be able to pull my kids all day to continue all the testing outside of my room one on one to HOPEFULLY even get close to being done by the deadline this Friday. This is only a deficit to my kids because they aren't getting the academic time they need, nor are we able to still get our routines and schedule down because I have to be with one every chance I get to do at least a few questions on one of their tests. I haven't even gotten a chance to start small groups or rotations yet.....ridiculous is an understatement and the only one getting the raw end of the deal are the students (aside from the teachers and all the data and paperwork they have to do). My students aren't getting what they need and deserve. My students aren't getting what I was hired to do, teach. My students aren't learning our daily class procedures and routines because it just isn't possible yet. My students are the one at the disadvantage....and isn't that the whole issue with education these days? I went to school for a million years to be over qualified to teach...let me teach. My kids aren't a number on a piece of paper from data accumulated from 4 tests. They are 5 year old kids who need structure and a chance to learn. 
Basically, my big bubble of visions and dreams of how my life would be when I finally got to back to teaching was popped....and I dont think theres a chance of gluing the hole back together and reinflat. My advice to you, cherish your kids teachers, give them a break when they forget something, acknowledge all the hard word they do, know they think about your kids 24-7 and use their nights and weekends to go up to school to do more work just to try to catch up. Teachers truly do have the hardest and most underpaid job there is for everything they do. Now if you'll excuse me, I have to go continue to spend my "weekend" working on my lesson plans and working on things for my classroom. That's a teachers "life".
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2 years...The Good, The Bad, & The Abundance Of Ugly

8/2/2019

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Beach hair, dont care

This time of the year is rough for me (a Dr told me Cancer PTSD is actually a thing, who knew, so I struggle with things often). Adding on top of the timing and being stressed about getting everything ready in my classroom in time, I mentioned to my therapist I was thinking about going to the beach my last weekend before school started (for teachers) but how I really thought I should stay in Austin to continue to grind it out in my room. Thankfully, after changing my mind multiple times, I decided I needed to take her advice and I'd regret it if I didn't go. So even though I may be cutting out laminating at the beach, I'm still here and know this is where I should be.

A little glimpse of the last 2 years...

2 Years Ago Today...

On this day 2 years ago, I was laying in a hospital bed after a week stay and a few surgeries, waiting for my biopsy results to come back after being transported to the ER not being able to breath. My oncologist walks in and confirms the results that I do indeed have cancer, and not just any cancer, but a fun, rare, and fast aggressive form. Thankfully, these few minutes were one of the rare moments in my many hospital stays where I was alone so I got to absorb the information by myself and attempt to figure how this was going to affect my life. A lot has happened in the last two years. That week in the hospital, and obviously after getting the confirmation of the biopsy results, my life was literally turned upside down and completely taken away from me in every way. Nothing would be the same in my life again. 
From losing my job, my apartment, my health insurance, my health and everything in between, everything was gone. These last 2 years have been emotionally, physically, mentally, and financially draining. If you've followed my 2 year journey, you know I literally underwent every procedure possible and nothing ever worked. Until FDA approved Car-T therapy I had no options left to fight and live. Last November, I was one of the first in the US to have Car-T therapy after it was FDA approved. Literally a million dollar procedure was my last chance, but also a huge undertaking. Living in Dallas for a month, on top of everything else that came along with it was obviously never fun. Not to mention this would mean losing my hair for the 3rd time...
A year into my cancer journey I didn't think any hope was left since I had done it all. There were many, many times I just wanted to quit and give up. I have always told my Beachers (students), "No one is perfect, as long as you don't give up and try your hardest that's all that matters". If I didn't live up to my own words than how could I continue to instill this into my students. So, no matter how hard it was, I just did my best. I've literally lost count of how many hospital stays I've had, times I've been poked and prodded, amount of blood taken, the number of iv's and tubes connected to me, the number of bags of chemo put in me, the number of radiation treatments I did, the number of doctors and appointments I've done, the amount of pills I've taken.....well you get the point. Cancer was a 4 letter word for me. The only constant was my amazing friends and family who never left. 
I can say, only after being on the other side of it and literally go thru hell and back (multiple times) that cancer definitely changes you. I'll always have my "tiger stripes" I got from having to live on predisone and the many cancer scars from multiple surgeries...but that is my new life. In every workshop or inspirational program I've been to or read, people always say you will never get back to your old "normal", you will have to build a new normal no matter how hard it is. I don't think most people can really understand or grasp how difficult this really is. First, of course, the task of getting your health back, then dealing with your mental and emotional stability after all you've been thru, next coming to terms with the financial burden you will be in till you literally die, and just putting the pieces back together of the ones you can find to try and complete your puzzle as much as you can. Sure, I'll always have some of those pesky pieces missing, but that's ok. It took me literally 2 whole years to finally start putting my pieces back together even after never thinking I'd ever get to this point or being able to complete my picture.
I finally got good cancer results, finally am going back to teaching (after 2 attempts in 2 years), finally mentally and emotionally on the up thanks to my therapist I continue to see weekly (thanks to the amazing Flatwater Foundation), and believing I can now actually plan for A future. Sure, I may never get to say I'm having children now, or getting married, or buying a mansion, or even get to say "I'm in remission".....but I will be able to say, I never gave up and cancer didn't win no matter what it put me thru. I can back up what I say to my students everyday about never giving up and in the end it will pay off no matter how hard it may be in that moment.
Cancer may be a 4 letter word, but I'm choosing to make it a positive 4 letter word now: hope, love, free, grow, give, kind, pure, wise...and maybe a little zest here and there. It's hard to stay positive during Cancer, but coming from someone who has literally been knocking on death's door, I can tell you it is possible to find the light at the end of the tunnel....no matter how long and dark that damn tunnel is. The pieces don't come easy, but if you keep searching and looking you will eventually find them (try between the couch cushions, there's always some hiding there).
I've been asked many times why in the world would I go back to teaching and the stress etc after all I've been thru....well, thats easy, I love teaching, and one of the many lessons I've learned thru cancer is to do what you love! Take vacations, be with who you love, eat the cake, buy the dress you've been eying for months....just enjoy life because you truly never know when its your last day Or another persons....enjoy and cherish everyone around you. Enjoy life while you have the chance.
Even though I won't be back at BCE and miss them more than words can explain, I am beyond excited to finally be back in my own classroom and with my favorite grade. Getting back to teaching was one of my biggest puzzle pieces I was trying to find. Becoming a CASA ad litem is just another piece I am proud to add to my new life chapter puzzle. Finally, my pieces are coming together, it may not be the puzzle of my old life, but a puzzle of my new normal slowly coming together. 
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Since I know you have all been on the end of your seats waiting (ha) for the 2 things I couldn't wait to share (sorry I forgot to post it here as well):

7/11/2019

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Accepting my certificate from the

​Honorable Judge McClenahan after being sworn in

I can finally share one of the exciting things I have been working on after months of 44 hours of training, hours of courtroom observations, writing court reports and looking at several other court cases (and obviously the pre-screening and interview, background check and driving record etc), I was officially sworn in by Judge McClenahan to be a CASA ad litem. I'm actually more proud of this accomplishment than I am of getting my masters (and let me tell you, I haven't done this much "school work", homework, and papers since grad school).
Now I don't share this big accomplishment and commitment in my life to "toot my own horn" but rather urge EVERYONE to look into volunteering. Sure, you may not have enough time to make this big of a commitment, but there are so many volunteer opportunities out there! With that being said, CASA advocates are in severe need in Central Tx. I will be taking cases in Hays, San Marcos, Comal, New Braunfels, and Lockhart and in these areas we literally only have enough CASA volunteers to advocate for 50% of our kids (Travis county has a MUCH higher percentage). That's 50% of kids in horrible life situations that have no one looking out for just them and being their voice, as well as someone they know will constantly be there when their living situations may be constantly changing or parents/family members in and out of their lives. I'd love to give you more info if you are interested! 
(I was also beyond lucky and thankful for my forever work wives to come and support me, as well as be a part of this special occasion! Love them!)
CASA mission: 
"CASA of Central Texas advocates for abused and neglected children in the courts, school, and child welfare system by training and supporting community volunteers."
"Advocates talk with the child, parents, family members, caseworkers, school officials, health providers, therapists, and others who are knowledgeable about the child’s history. Advocates review school, medical, caseworker reports and other documents regarding the child during the year the child is in foster care."
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Brodie is available for autographs

6/24/2019

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I was dying this time last year 😂
Oh what a year it’s been....I definitely look better with hair (even if it is a mop) 😊
(And Aunties boys are way too big 🤦🏻‍♀️)
#NeverGiveUp #OnwardAndUpward #CancerSucks
PS: the plant’s still alive....I know, I think that’s the most surprising part too 🤣
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ALSOOOOOOO

A few months ago, I was asked by Texas Oncology PR to write about my experience regarding CAR-T since I was one of the first in the state to get receive it after it was FDA approved and am thankfully part of the 45% success rate (and will hopefully continue to be in that percentage). 
With that being said, my first task was to write a blog post for them to post on all social media and their website about my experience etc. My rough draft was 3 pages so the poor PR and web team had to edit quite a lot to keep under the word limit they needed : )
but still happy with how it turned out...
Enjoy!

www.texasoncology.com/who-w…/…/2019/staying-positive
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The Little Car-T That Could...

6/14/2019

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Just a quick update....it's been a crazy and busy last few weeks to say the least!
If you remember, my post 3 month Car-T scan my mass had shrunk and was 2.8 x 2.2 in size.
My latest 6 month post scan was great news...my mass has continued to shrink and is now 2.3 x 1.8 in size!
Fingers crossed the Car-T keeps working it's ninja magic and the mass will continue to shrink or at least stay stagnant BUT I feel great!
In other news, my life has literally made a 180 degree turn and I haven't had this much 'good" happen in years, especially since cancer, and everything is finally looking up!
-I'm FINALLY getting back to work (for real this time). I interviewed at an amazing school (that never has openings) with a full house on the interview team, which didn't help my nervousness, but I ended up getting a call just an hour or two later with the job offer! I am beyond thrilled to not only be getting back to work, but getting to know my new amazing and supportive team. I can honestly say I truly feel like I am right where I am supposed to be. So many signs pointed to this job and when I found out I got it I was ecstatic and anxious all at the same time. I think I am the only teacher in America that is already ready for summer to be over and for August to get here so I can start setting my class up....and my life back up as well. 
-Another big thing has happened in my life but I can't reveal that until the 20th...but let's just say I'm more proud of "this" than anything I have done in a very long time, including grad school....even though the work involved was literally at the level of work I did in grad school so it's been a long road.
- Yet another huge deal has come my way that I will also "reveal" and share with you when it's complete...hopefully in a couple weeks
-Other than that, I have finally started "living" again and couldn't be much happier (aside from a one thing, but that's a whole other story lol).
​I was on the drive home the other day and the song "Livin" by Dierks Bentley came on and I literally just stopped and listened and realized I was meant to hear that song at that particular time (cliche, I know) anyways this was from my facebook post the other day for those that didn't read it: 
For almost 2 years I haven't wanted to do anything, talk to anyone, or see anyone (no matter the person)
Some people didn't get it or understand it but sometimes when you're going thru things you really can't explain it to anyone
Some people stay, some people go, but that's the true test of any friendship or relationship
FINALLY things are on the road to getting normal and I realize after going out and talking with people after so long of "not living" that that's exactly what I needed
There's a time to have your own pity party and feel horrible about yourself....then things eventually start turning around (even if it does take 2 years) 
Talking to and seeing people I haven't in forever (bc of me), getting back to work, having great CT scans (and other things)
"And it hit me, It's a beautiful world sometimes I don't see so clear" and it's time to start "living" : )
#ThingsAreFixinToGetRealGood

Blue's a little bluer up in the sky
You're high's a little high
You feel that fire you've been missin'
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Knock on Wood

4/23/2019

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CAR-T Update

As previously mentioned, my first post PET scan that was 3 months after my CAR-T infusion showed my main mass in my chest has shrunk. Hopefully, the ninja cells will continue to keep fighting and my next PET scan (hopefully in May contingent on lovely insurance of course). Cancer wise I feel sooooo much better than anytime period since being diagnosed. Unfortunately, those darn kinders gave me something fun in February and it transformed into chronic infections which have been horrid. After 3 different antibiotics, different prescription nose sprays and steroids (my body literally laughs at any medicines any nothing ever works) the last round after months of crud has finally made a difference. My immune system is just gonna take a while to build back up again even with the help of monthly IVIG infusions. My last oncologist appointment showed my levels were all still looking good. I've loved being back in classrooms subbing and getting back to teaching english to students in China online again BUT can't wait to start interviewing to finally get back to teaching in my own classroom this next school year!
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Sometimes you've just gotta put your big girl panties on....and paddleboard!

4/18/2019

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Confession: I can't paddleboard....well, I've actually never tried BUT just the thought of falling off and not getting my big butt back up is a sight no one (including me) ever needs to see.
I was so honored when Britt made this post to make donations in my cancer journey honor to the upcoming Flatwater Foundations "10th Annual Dam That Cancer"! I wanted to share my experience with this awesome foundation and encourage you, if able, to donate to such a great foundation.
I should start by admitting I didn't want to go to counseling after my cancer diagnosis. This is NOT because I don't "believe" in counseling/therapy etc, in fact I am the complete opposite and think everyone should go to and/or would benefit in some sort of counseling in their lives and I myself have been to therapist multiple times in the past. I was a hot mess before cancer so after being diagnosed you can only imagine how lovely I was then.
Why didnt I want to go to counseling then when I obviously needed it the most? Well, in my head and thinking going to a therapist and talking about your bad day or bad break up etc was far different than 1) opening up about how you're feeling about cancer 2) in all honesty no one can understand how you are feeling because they haven't been thru what you have OR if someone has had cancer, everyone's journey is completely different. and 3) talking about it isn't the easiest.
After my 6 months of intense chemo didn't work (when I was told would be the answer and I'd be done) and then after radiation was a failure I literally had 3-4 of my doctors (on different occasions) bring up the suggestion of me going to a counselor. When it gets brought up by one dr is one thing, but when multiple doctors bring it up you can only imagine the lovely state I was in. My first thoughts were 1) the last thing I want is to go talk about this on top of the going thru it 2) adding one more appointment to my already crazy dr schedule was not very appealing and finally 3) I obviously couldn't financially pay to go see someone no matter how bad I needed to or not, I mean I can't even pay my monthly bills/student loans/cancer bills as it is.
The turning point was after one of my doctors again brought the topic up and mentioned that the Texas Oncology social worker could do all the leg work AND it would be covered by a program called the Flatwater Foundation so I financially wouldn't have to worry about it. I was now out of excuses so I folded and the next week I started seeing a counselor that I was set up with and have been seeing her every week since! Best decision ever and I wish I wasn't so hard headed in the beginning and started sooner. Life is hard in general, life with cancer is a whole different ballgame, especially when all treatments available were failing. My counselor on more than one occasion has mentioned how amazing the foundation is and how easy they are to work with. I am beyond appreciative of this foundation and encourage more cancer patients to look into it AND for others to donate to them if possible, you truly will be making a difference. 
I also encourage you to sign up to paddle board if you're more physically inclined than me (which doesn't take much) or to even volunteer for the event with me! 
I will be cheering Britt and all the other paddle boarders on from the sideline while volunteering and appreciate all the supporters! I have attached Britt's donation page for his paddleboard team and also the link to the Flatwater Foundation for you to read more about it!
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​www.classy.org/fundraiser/1937241

www.flatwaterfoundation.org/

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Slowly But Surely!

3/3/2019

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This week I did my "follow up" CT scan since an active spot (different from my original mass) popped up on my post CAR-T 3 month PET scan, so they could see it better and get more info etc. The oncologist office called a few days later and said they think it's ok (so who knows what it was). My original mass measured 38x51 in August 2018 at one of my many scans after chemos etc. Now my original mass is 22x28, so yes it's still there BUT it has obviously shrunk. Fingers crossed the CAR-T continues to show its ninja skills (assuming that's what is finally helping it shrink).

Also, I am finally half way done with my monthly IVIG infusions (3 of 6) so hopefully my immune system continues to get stronger...although this time of year has not been the easiest to not get sick! Just now getting over whatever loveliness the kinders gave me weeks ago.
And Brodie continues to live his best rockstar life...his cancer scan/surgery follow up is in May. This is his "I love you, I surely don't mind being your example picture for my cousins Dr. Suess day craft" : )
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You Win, Cancer, You Win

2/22/2019

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Brodie update: He had it rough for a few weeks but has bounced back like a champ...

Me:..........
Well, this time last year I obviously wanted to go back to work (for many reasons), got a teaching job....then several weeks after found out my cancer was back (or never really gone) and treatment didn't work. There goes that job (not happy).
This year I finally physically felt better and have done all treatments (and then some) so I desperately wanted to get back to work.....again, for MANY reasons. Same situation, got a teaching job (which is far from easy being a teaching this time of year may I add), called social security to end my disability that we had started (which with Cobra, didn't even cover all my monthly bills) and was told there was a new rule put in place that if you return to work within a year of receiving disability you have to pay the entire amount back. This literally would mean I would have to pay back around $15,000 (but don't worry, he said he could put me on a payment plan....haaaaaaaa). He then told me my "year" would be done in February so I just couldn't make over X amount for February and then I wouldn't have to partake in the new rule (that no one may I add was notified of).

After a mini break down and going thru ideas in my head how I could avoid this (because there is obviously no way I could ever pay that back), I contacted EISD HR which were beyond understanding and helpful and basically figured out a way to get around it...which entailed me getting sub pay for all days worked in February and then having to take a few days "off" so my gross total wouldn't be about the X amount. Ok, crisis averted thanks to admin and HR but then I was still confused and unsure of the whole ordeal and again talked to the SS worker. He then backtracked and said actually my "year" wouldn't be up till June (which made more sense because I was still working February of last year so shouldn't of been on disability). Great, all the help EISD had done for me was now useless and I've basically completely wasted the districts and schools time.....beyond embarrassing. 

So last year cancer hindered me from going back to work because I physically couldn't. Fast forward to this year I'm finally feeling good and I literally can't work because social security would rather pay me disability. If you can make any sense of that, please let me know. Not sure why the government would want to continue to pay you money versus you getting back to work. So my advice to anyone on disability due to whatever cause, cover all your bases before attempting to build a life back. Although, I would've never thought social security of all things would be one of my bases I had to cover. So, I am now having to apply to be a sub in several districts, go to orientation, then hopefully start subbing...but still making sure I don't make over X amount and I can go back "full-time" next school year. 

While all this fun is going on, I also had my first PET scan set for 3 months after CAR-T to see if it worked/helped etc. Literally the same day I found out I couldn't work is the same day I found out my PET scan results. So, my main mass did shrink in size, however is still there and active....and now there is a new spot showing up. Lovely. So my oncologist wants a CT scan to get more information on it. So there's that.

Whats the new spot? No clue. How could I get a new spot when my other main mass shrunk? Ya, still no idea. The only other issue was my blood is still on the anemic side (which it has been since car-t) so I may have to have another blood transfusion if it still doesn't improve next bloodwork. 

It's been.....a week.
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Now I have the task of unloading my car back into storage of all the classroom things I had just spent days going thru boxes to find and use in my classroom. Guess they'll have to wait to see the light of day until August now. 
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What Are The Odds

1/20/2019

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Next time you think you're having a bad day...think of me, I'll trade you lives

First, if you don't have a dog you might as well stop reading now. Secondly, if you have a dog but also have a kid (with 2 legs) you probably won't get it either. 

Brodie has been my baby for a third of my life, actually I can't really remember life without him. He's always been there. Especially during my cancer journey.

Last week after I got home from my IVIG infusion he wasn't doing good...at all. My parents brought him to the emergency vet who after some tests and x-rays found a mass in his chest and fluid in his lungs. Sound familiar?! Yes, its exactly like what happened to me. He got his lungs drained and some medicine to help internal bleeding since they found blood in what was drained. They then sent the scans to get read and the next day my mom got the call that it was more than likely a cancerous tumor. He then needed to be brought to a special vet oncologist in San Antonio who did a cat scan and later confirmed it was cancer....literally the same spot as mine. He is going back tomorrow for surgery to hopefully remove the tumor...if it's possible. 

Brodie IS my kid so I don't expect anyone to understand or relate to thinking your kid having cancer when mine just has 4 legs instead of 2.
To be honest, I only did my million cancer treatments, procedures, medicines, hospitals etc FOR HIM. Why? People know you died and will eventually accept it and move on...animals think you just left them, didn't care and never came back. Do I care about my family and friends having to go thru me dying....of course....but I could never just leave Brodie and never come back and he think I left him. 

So yes, it might sound crazy to most that I care more about a dog than anyone else....but unless you've had a pet that's been your "child" for 13 years I don't expect you to understand.
​
What are the odds my dog and I would end up having cancer together in the same spot? 

Just so we're clear, I'd pick him over me any day.
Keep him in your thoughts Monday

Brodie Update (if you didn't see it on FB): He went in a puppy and came out a tiger one day then a giraffe the next! BUT he’s home! He was in an incubator at the hospital bc he needed oxygen. They had to break his breast bone to get to the tumor. It was pretty good size for his little body. He also had to have a drain to get fluid out. Supposedly there were no “tentacles” formed so they said they got it out. That’s the “good” news....
Unfortunately, the cancer was however attached to his lung so they had to cut that part, remove it, and put staples in. It’ll probably be a minimum 3 week recovery. I’ve had a lot done to me with my cancer, but I can’t imagine having my bone broken, tumor taken out, staples in my lung, and stitches down the majority of my chest. Hopefully he has a quick recovery and will be back to the old Brodie soon! I couldn’t emotionally handle seeing him there so thankfully my parents did it all. We’ve officially had enough cancer between the two of us so hopefully we’re done now! 💕
"My update": my first PET scan (the post 3 month scan) is scheduled Valentines morning...this will show if the CAR-T worked at all and how much etc. It usually takes a few days to get results so Im assuming the following week I should hear. 
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Car-T and Beyond...

12/13/2018

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I had my car-t infusion November 5th. Thankfully, it went much smoother than I was preparing myself for...but of course, I wasn't exempt from a few issues. I didnt start to have any side effects until a few days in which consisted of the typical fever, nausea, no taste, and always tired. I had a few instances of neuro fun but nothing compared to what I went thru a few months ago. I also, thankfully, didn't have any seizures or go into a coma so cant complain too much! However, being the first person having Yescarta (car-t) to have the crazy swelling issue was far from fun....or attractive.....but being the first person in Austin to have car-t is neat, I guess (if it works). My Austin oncologist is learning while going thru it with me as well...yaaa for being a guinea pig.

After being in the hospital for 2 weeks (mandatory length stay after the procedure) I was allowed to go stay in the transplant patient apartments Baylor has right by the hospital called, "Twice Blessed". It was so much nicer to be out of a hospital bed and not connected to iv's and a pole all day and night. However, our apartment was right across the street from the fire station and right next to the bus stop (of a very interesting part of Dallas) so we "got" to listen to sirens and talking almost all day...but still cant complain since these apartments were a fraction of the price a hotel would've been had we not been able to get into them. During the apartment stay I still had to go into my Dallas oncologist every other day to do labs and check my neuro state etc...I never believe how much blood one body has...I surely thought at some point I was going to run dry. I can't even remember how many times I was poked....not to mention they couldn't get my blood to draw multiple times so they re-stuck me....and re-stuck me...and put lines in that then failed....so re-stuck me again to put a midline in my arm...which then also quit working so I got stuck again....well you get the point. The nurses also had a hard time accessing my port...I was poked a couple times and it didn't work so they kept bringing in different people...it was ridiculous. The biggest issue I had was the nausea (but thankfully medicine usually worked) and the constant hot/cold sweating (you're never comfortable)...and that's much better than having seizures any day. Since I wasn't having any severe side effects my dr thankfully discharged me a few days early so we got to come home before December....even though missing Thanksgiving food and family sucked. 

I couldn't wait to get home to Brodie...and my bed!

Now that I'm finally back in Austin, I still have to go once a week to my oncologist here to get labs drawn etc. In addition, I have to come once a month to get IVIG, which is an infusion that basically helps my immune system start to get stronger again, but that should only be for a few months.

People keep asking me if I feel different or if I feel like it's working etc. No. I feel the exact same way I did before car-t. I literally wont know if the procedure worked/is working until my first PET scan that's 3 months after infusion (so February). So nothings really changed except I'm tired 24/7 and some days literally have a hard time keeping my eyes open...but I know that's just part of it and will gradually get better. I'm just glad I get to sit and watch Hallmark movies surrounded by Christmas : )

My plan for the future:
~ If the Car-T worked then I will thankfully get to go back to work for next school year (although I will probably try to do something to bridge that gap for financial and sanity sake). I literally CAN NOT wait to get back into the classroom. Then of course attempt to rebuild my life one piece at a time.....a long road daunting road
~ If the Car-T didn't work, I'm done. I'm done in the sense that I literally have undergone all the chemo, radiation, medicine, and procedures available and none worked. And done in the sense that even if there was another chemo in trial etc I would say no. I refuse to go thru being connected to an iv for days and days for chemo again. I cant do the "in the middle" life anymore. When you cant work, cant go out, cant make money, feel crappy, have dr appts constantly etc...that's just not a life. I either want to begin starting over or be done...and I'm fine with that (after a while you come to terms with dying).

Until then I will just have "scanxiety" waiting for my PET scan in February. 

~Yes, my hair is still coming out as you can see in the pictures

GO DONATE....ANYTHING....PLASMA, BLOOD, ORGANS.....you'll literally help someone stay alive. Found out I can't donate anything...ever....because of having cancer : /

I did a thing.....or two

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This is what I do these days...

Kristi <3

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Gotta dress the part...

11/5/2018

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Getting ready...

I did my 3 days of chemo wed-fri last week to basically wipe out my immune system so my T-Cells will have room to show thier newly learned ninja moves. Unfortunelty, this chemo made me pretty sick...for several days....so needless to say I was ready for Sunday to get here to be admitted into the hospital. When doing Car-T (here atleast) they want you to be admitted the day before to make sure everything is ready to go the day of infusion the following Monday and no hold ups. So I got admitted, my port connected and then a CT scan done Monday morning for the before comparison. 
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Only time will tell...

I mentioned the other day that this last chemo would be my last ever, then was asked what if the Car-T doesnt work etc. Yes, this is a huge possibility (more probable than it working actually), however not only have I already done all that there is to do, but even if another chemo was offered to me, I would opt out. Going thru chemo the rest of your life is no life at all, you have to be ok with nothing working and coming to terms with dying and not being in pain anymore. 
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Yes, there are countless side effects to car-t. I could be lucky (ha) and just get the bare minimum, or I could get everything possible. Here are some things others have experieneced that may or may not happen to me:
~going into coma.....a day to a week or so
~temperature, flu like symptoms where youre sweating 24-7
~forgetting who people are, where you are etc
~forgetting how to walk/talk/write etc
~complete confusion and not knowing where you are
The "plus" to all the side effects are that none of them are lifelong and most people dont even remember any of it happeneing. However, the reason I have to stay in Dallas for a whole month is that any of the neuro issues could start at anytime and I have to be close to the hospital to be readmitted when it happens.
PS: No flowers allowed on the transplant and ICU floor!

ICU room

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 If you wanna be Wonder Woman....you gotta dress the part! Obviously cape included...

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I'll post the Car-T infusion pics and fun later...

Also, thanks everyone for all the sweet and amazing texts, messages, prayers/good karma and comments. etc...no one could ever make it thru cancer without such awesome support and love!

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The End to the Beginning (yes, that order)

10/17/2018

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I guess things are finally about to start. Next Tuesday is my birthday and the following Tuesday my month long Dallas fun begins. I'm happy I'm not there for my birthday, but missing Thanksgiving is a bummer. 
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T-Cell Retrieval day

Like I mentioned on Facebook last week, nothing really went as planned when we were in Dallas (surprise surprise). Thankfully, after my oncologist nurse was on the phone for hours and trying to get everything to work out time-wise we finally got it all done. However, to stay on the time schedule we had to drive to Waxahachie early Wednesday morning to get my catheter put in my neck (of course my arm veins weren't big enough and would have collapsed if used). Ya, you know what doesn't feel good?!...getting a catheter put into your neck....you know what could be worse?!....having them have to prep you, stick you with the huge needle and give you the worst numbing shot ever just to find that that particular side of your neck wasn't viable after they were already in so they then had to prep, shoot you with the worst medicine ever, then insert the huge needle on the other side of your neck....basically like having the surgery done twice. What could possibly make it any worse?!... having to say no to getting to have nice drugs to put me out and not feel anything because I couldn't stay longer to wait for the anesthesia to ware off and had to go straight back to Dallas to start the retrieval there...ya I got gipped on that deal. What was supposed to only be a less than 10 minute thing turned into over 30....my typical luck...and if you remember that is the same exact thing that happened when they put my port in and why I have a port incision scar on both sides now. What are the odds....

Because of timing my cells HAD to be collected wednesday to be flown to California or the lab couldn't take them till another week....ya, not happening. The retrieval process was pretty interesting I guess, but pretty uneventful and exciting. During the course of over 5 hours I laid there hooked up to this big machine that gradually throughout those 5 hours took out 12 liters of my blood, took the cells out needed, then returned the blood to me....this being why you have to have a big enough vein to do this procedure ie in your neck if you're one of the unlucky ones. Thankfully I'll get to use my port for harvesting day. It's pretty crazy everything they have to do legally and procedurally for this whole process. I took a few pictures, but basically after you are done the bag of blood that literally fits in your hand has to be signed of by x amount of people, a ton of paperwork done on it, a ton of things entering into the computer with another persons having to ok it and sign off as well. Then put into a big, very secure box packed with some contraption to keep it at the right temp and a machine that makes sure it stays at that temp until taken out. A carrier comes to the hospital to get the box, takes it straight to the airport and sends it to LAX where it is then signed for again off the plane and taken by carrier to the lab where its then signed by someone again. It makes you wonder how much just the whole shipping the cells part actually costs.....needless to say my cells have had more of a vacay than I have in years. Cells are received the same night of retrieval and literally started on that night. Supposedly, after 10 or so days they know or can tell how its going, if the cells are going to work, and if they will be on schedule to come back for harvesting. Meanwhile we wait. If they are trained ninjas on the current timeline, I will be headed to Houston in 2 weeks (the 30th) and there for several weeks, specifically in the hospital for another lovely stay of a minimum of 7 days then depending on my symptoms and neurotoxicity either released to stay close to the hospital or having to stay longer for observation. 
​I've obviously been asked a million times what exactly Car-t is and how do they "train" my cells....ya, no clue how to ever answer that question but if you for some odd reason like medical talk and medical terms the below link is just for you ; )
www.cartcellscience.com/car-t-cell-science#page-section-1
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Negative Nancy? No, More Realistic Rita

You always hear, "don't judge a book by its cover"...this phrase has become more and more descriptive of my life over the last year and a half. For instance, I may not of always looked sick on the outside, but burning rage was having a party on the inside whether it be the cancer or my emotional state. From the outside looking in, seeing the baking classes I've been going to, movies, and massages you would think I'd be living the life....when in fact I'm just trying to do anything to attempt to keep my mind of things on top of not being stuck in the house. Plus, if the tumor didn't kill my back so much I wouldn't have to have massages to attempt to lessen the daily excruciating pain. After not being able to work for....way too long....you have to think of anything to keep you sane. 

Ironically, a phrase keeps coming up in my counseling sessions that makes me think of the book cover reference, "I don't want to live, but I don't want to die". Now most people might see from the outside looking in that if the car-t works I'll be fine and dandy, when in fact you couldnt be further from the truth. You say Negative Nancy, I say Realistic Rita and heres why, cancer literally takes your entire life away:
~trying to get a job with cancer or after having cancer is basically an olympic sport and ridiculously hard no matter what my experience is and degrees I have
~your body will never be the same on the inside OR the outside
~your dreams of having a family go out the window (1- bc of the maybe 1% chance I even am still fertile after all these chemos, radiations, and procedures but also 2- who wants to be with a bald person that looks far from what they used to...tiger stripes and cancer weight galore not to mention the emotional side of it
~the world revolves around money....I was already going to be paying off my undergrad and masters loans till I died, now throw in cancer costs and you're pretty much in a hole you can't dig out of
~it also takes money to afford a place to live again...who knows how long that will take
~if and when you finally get a job, who knows if your body will be able to keep up since financially you'll obviously be going back sooner than you should physically 
​~every time I get sick the first thing you think is cancer...not to mention the likelihood of the chance of getting another type of cancer is high and even if car-t does work the likelihood of it lasting long is doubtful. Yes, I've read several people who are still in complete remission after, but there are still half that it either didn't work to begin with or only lasted 3 months to maybe a year....then you basically start all the way over (who wants to do that?)

So when  I say its the beginning to the end, it literally is for me, its hopefully the end of cancer and the beginning to attempt to get somewhat of my life back, but I have to be Realistic Rita. I've heard cancer survivors say many times that people think everything just goes back to normal after cancer, when in fact you will never have a normal again...you just have to make your own new "normal".
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FINALLY

10/4/2018

1 Comment

 
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I found out last Friday that everything had finally gone through with my insurance, the oncologist, and the hospital...it only took how many months?! I am scheduled to be in Dallas next week:
Monday- meeting with my oncologist the last time before starting and getting a vein check
Tuesday- Line placement day...not so fun! Monday they will be looking for basically a substantial part of my body they can go thru with the IV to get a strong vein that can withstand the procedure. Honestly, most people I have talked to or read about have had this done in their neck...definitely not looking forward to that...but at least its only in for a day regardless.
Wednesday- I have to be at the hospital at 7am to do my t-cell retrieval...goodbye millions of cells

These will then be frozen, shipped to California, and taught karate and kung foo fighting. Apparently around 17 business days they hit black belt status and are then sent back to my hospital. I'm assuming this will be around Oct. 29th-ish. When they come back I will start my 3 days of intensive chemo to completely wipe out my body so when the newly trained cells are put back in me they have free reign with a blank slate to hopefully work their magic. Yes, this means I will more than likely lose my hair for a 3rd time (or at least the little thats grown back since March).

After the 3 days of chemo and the cells being put back in me is when the real "fun" starts which I will wait and blog about later. Let's just say it won't be all unicorns and rainbows and this whole procedure brings the opportunity  for a long list of side effects. Because the side effects can be so bad, specifically neurologically, I have to stay in Dallas for a month to be close when something happens and I have to go back in. Just the risks you have to take to stay alive these days apparently! So far, this CAR-T procedure has had a 50% success rate...so fingers crossed I will for once in my life get some good luck vs my life long string of bad.
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^^^^^^^The true definition to cancer ^^^^^^^



So, it looks like I will thankfully not be in the hospital and/or Dallas for my birthday as I originally thought (one benefit to the long approval wait) but I will probably be there for Thanksgiving. I have a mountain of stockings I'll be sewing to hopefully keep me from going even more crazy...if that's even possible at this point.
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Cancerversary

8/2/2018

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If thats not embarrassing, disgusting, and sad....I don't know what is. Oh what can happen in just a year. Right before I ended up in the hospital last year and a couple days ago coming home from a drs appt.

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No good, horrible, very bad day...

I know I haven't posted in a while so hopefully I can condense all the craziness from the last month. No, I'm still not in Dallas to do the CAR-T and it's beyond frustrating. I don't feel like there is any sense of urgency on their end....maybe because it's not their life that depends on it. Either way, we are at least finally at the point where I will be going up to Dallas the week after next to do a psych test (for insurance and to make sure you are "sane" enough to go through the horrible CAR-T), EKG, and the blood tests to all verify me to get accepted. Im hoping after this is all done that the insurance part will go smoothly and I can start as soon as possible. 
So, I beat the 2 weeks thanks to steroids (they keep you alive but destroy your body in the process), however the steroids completely ruined my body in almost every way. First off the worst part was the psychosis, I literally went crazy without knowing it. I was seeing things, teaching my beachers in class at night, hearing/feeling things in/under my bed, screaming during the night...a lot, and obviously getting no sleep. They also gave me horribly dry hands and feet that felt like sandpaper. I was talking so fast, not intentionally, that it was hard to talk or understand me, especially with the slurring coming along with it. I would text people who knows what and look like a crazy person. I pretty much couldn't use my phone though. My vision and hearing went to crap. I had absolutely no muscle in my legs so getting up, even from a chair, was a job in itself. The ground was shaking or moving 24/7 so it was difficult to steady myself. I couldn't write. I had tremors and some other thing where it looked and felt like I had turrets, I would out of no where yell things and also have a part of my body twitch or jump...and this was constant and nothing I did helped. The "turrets" also made quite the mess with broken glass, food splattering on the walls and floor, and drinks before knocked out of my hands (by my own hands) and liquid everywhere. My parents are super excited I live here. It also gave me these lovely "tiger stripes". The pictures don't do it justice, they are huge and dark. They are horrible. They may not ever go away either even after the steroids are out of my system. They are primarily on my stomach then started going up my side. It's quite lovely. They look like stretch marks but aren't. I forgot what my dr called it. But they itch and it feels like my skin is being eaten from the inside out.
Heres another fun incident because of steroids. I was going to the bathroom and either passed out of feel asleep....which then made me summersault in front of me....in to the wall.....ya that indention would be my head. It hurt...but definitely woke me up! Did I mention my parents love me living here.
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ONE YEAR OF:

~no sleep
~blood
~shots
~iv's
~steroids
~medicine galore (I feel like I intake a pharmacy daily)
~dr appts
~hospitals
~not working
~no money
​~not having a life

Look of the year!

Thank you to everyone to bought a #TeamBonnet shirt! I was surprised and speechless at how well we did and so thankful to be able to put it to medical bills. And again, thank you Ally for ALL you did...which is pretty much everything : )
​Here are a few of the amazing pictures I've gotten:

Don't cough or sneeze

Because of the psychosis my new neuro dr wanted me to get an MRI to make sure everything was ok. Thankfully, everything came back good so it was confirmed that it happened because of some drug interactions. Hopefully I never have to do one again.
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Did I mention one of my besties got a tattoo for me?! (love her)

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So now it's just a waiting game again! Hopefully after the tests in Dallas in a couple weeks my injection day will be scheduled so we can start.

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From MD to Dallas

6/25/2018

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These are so hard to keep short and sweet. On one hand I want you to come read the cliffs notes and go with your info...but on the other hand If I didn't say what i want to say or explain things it kinda of defeats the whole purpose of why I started this blog in the first place. When I got diagnosed the first thing I did was obviously my own research....for hours. I realized not many people shared their entire story (trust me, it's not at the top of my list by any means). I didn't actually visually see what I could look like (more than just physically), and I'm the type of person that wants to know everything to feel more calm or understanding. After searching the internet for several more weeks I just decided if just one more teacher, or one more young adult my age gets this, they aren't alone, because let me tell you, alone is all you feel.
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Things sure do change within the blink of an eye. Some pictures are during the time the second type of chemo wasn't working, I got to check in then. We then quit the remaining chemo sessions we had left and then started immunotherapy, i would be on Keytruda specifically.

Now for the next round of fun: immunotherapy. This was supposed to be smooth sailing and I'd be done in just a few weeks then only have to come once every 4 weeks because the success rate was so high. Well we started week 1 of Keytruda, wasn't bad until a few days in and then it was almost embarrassing how bad I hurt. I finished my second round and almost immediately the next day thought I was dying, and I don't say that to have a pity party or lightly etc, but just to give you a literal and realistic glimpse. I couldn't breath, nothing, gasping for which then feels like eternity and just starts the anxiety attacks, night sweats yet again but much worse (if even dreamed possible), chest pain the worst I've ever had. Basically, the Keytruda was killing me even though it was helping my tumors (they shrank a little). I was part of that wonderful .01 percentage again that this rare case could happen. 
Now all my levels were screwed up yet again and I ended back in the ER for a week. while there the number one goal was breathing......well and to stay alive obviously. It was beyond hard to breath, or do much of anything. i had a catheter because I couldn't leave my bed. After 4 or 5 days I finally got myself to the chair next to my bed, this was big news guys! On that note, its never been so hard to move in my life! I feel like being bedridden for so long I instantly lost any leg strength...which worried me. 
After multiple doctors worried about letting me go when my numbers still weren't where they should be, I got to go and promise I'd work everyday to continue to move foreward.


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So for the last bit of interesting news, but by far the biggest thing since sliced bread....or at least since I was born. Since so many different types of cancer fighting drugs didn't work, along with obviously many other qualifications, I found out about a a immuno trial that had just got FDA approved only within the last few months....IE they still have no data on it. This is the CAR-T thats $400,000. I was initially supposed to do it at MD, but that was a ridiculous insurance show and they said they didn't take my insurance anymore.....huh? There is only one other hospital in Texas that does this since its so new etc, so I will now be in Dallas....pretty much all summer. ​There is obviously a lot more I didn't get to but I think you have a good enough grasp on whats been going on now since it changes daily and lots of people have been texting and asking since I have been a blog slacker! Now to just wait on insurance and then get the ball rolling....hopefully all in time.....sooner rather than later.

6 Comments

My Week Vacay at Seton

4/25/2018

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A look into my unexpected (yet again) 6 day stay in the hospital.

I swelled....I swelled a lot. Trust me, I know how bad I look in these (and looked in the hospital) but you had to see just how bad it was or you'd never believe me. 

Yesterday, I got my first ever blood transfusion AND a platelet transfusion right after. It's weird to think I have someone else's blood and another persons platelets in me.....but it could also be what keeps me alive, you never know! On that note, GO DONATE!

The biggest issue in the hospital was my blood pressure, my heart rate, and my white blood count. They finally got my blood pressure better a few days before I left. My WBC was .2 when I was admitted (if you know anything about these numbers you know it wasn't good). I then went down to .1 for a day or two, back to .2 and lingered....still feeling like death. Finally, Wednesday it went up to .5 (still not amazing) but anything helps and even just that little helped me start feeling ok. My last day it got to 1.5 so I got to break out of the place after 6 days. 
With the multiple scans done, I found out that not only was my cancer not reacting to the new chemo, it was basically putting it's middle fingers up and laughing....all while GROWING! Yup, growing, the exact opposite of what it should have and why I was hurting so bad and ended up in the hospital etc. Because my cancer didn't react positively to the new chemo, the stem cell transplant is pointless and wouldn't work. So on the plan Q. I will be starting immunotherapy TOMORROW. Fingers crossed this lovely stuff inside me has better manners and at least shows the MEH face this time around or a thumbs up.
I wanted to keep this one significantly shorter than the last one, but I'll fill some more in a different day.
OH....AND GO BUY T-SHIRTS!
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2 Comments

On to Plan F

4/23/2018

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Friday the 13th.....what a day

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Imagine this, you spend your whole life working for ONE goal and one day you are told, because of cancer that ONE thing you always wanted will NEVER happen.
I've literally worked with kids and babies over half of my life, took care of other parents babies, taught them how to sleep thru the night, put them to bed (along with every other mother duty needed), even became a teacher to be surrounded by them all day because all I ever wanted and was excited for, when the time was right, was to be pregnant, become a mom, and have my own babies. 
Friday the 13th, I was told this was no longer a possibility...0% in fact. After doing my first 6 rounds of chemo I still had OK odds. Then have cancer come back and another round of chemo and that pretty much did it. If I have to have a stem cell transplant that solidifies the zero. Other options if the transplant isn't the go to option anymore have the same results. Actually, I was told I am more than likely already at 0% fertility given what my body has been thru because of cancer. So ya, there's that.


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Before that fun appointment, I had an appt in the morning to see my oncology PA, she had to do my bi weekly check in and show me how to inject my own shots the next couple weeks for my white blood count. Can't sound much lovelier than that! I had been progressively feeling worse each day so I was already pretty much gone. Because of scheduling issues at the office, I ended up having to go back in to the oncologist at 3 (right after the stem cell appt) to get my last chemo of the week and finally get the 24 hour iv/pump detached from me. I felt horrible but I never complain. The longer I sat there during chemo the worse my pain got. I knew since it was Friday afternoon if I was going to get any sort of prescription help now was the time. Mind-you, it literally takes a horse pill to do anything to my body so the previous pain meds they had given me had never worked and another reason why I never asked....but this pain was tough. So, long story short, my drs nurse came to look at me and talk to me and what hadn't worked in the past etc. She then called morphine in for me (which will be brought up again at the hospital fun). Spoiler alert, the morphine didn't do a darn thing either.
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Fast Forward to the Following Thursday...

As I mentioned earlier, my pain and issues were getting worse by the day (actually minute) and I literally couldn't move, breath, or stay awake. My oncologist was going to keep an eye on me and my levels and I'd be back Thursday for my next regular biweekly appt. My goal was to make it to Thursday. Not sure how pain-wise I did but we got there. Well, I was physically there but still couldn't breath, hurt all over, and was just having a rough time. My blood counts didn't come back pretty, which is what I was expecting given my current feeling of death. Apparently they were worse than I thought because both my drs said to go straight to the ER. Now a lot of you were confused why a dr couldn't just emit me to the hospital. Here is why the ER route was what I needed:
-how bad I was I would get immediate help
-I'd get every scan my dr wanted within hours which isn't the case other than the ER
-I'd immediately get hooked up to fluids and anything else needed
-ER emitted me into the ICU (or ICM, whatever Seton calls it, the step under ICU) and pretty sure my dr cant do that, nor that quickly if could

I got an echo, ekg, chest xray, more blood work, and a ct scan done. The most imporant was the CT, this scan not only showed the new round of chemo wasnt working, but that my cancer was basically just laughing at it and had deciced to GROW instead of minimize....this being why I was feeling so bad the last few weeks. 

So I went in for a routine oncology appt and ended up in ICU. That was Thursday....its now Monday and I'm still here.. and told I will be for a few days. My white blood count is literally nonexistent, my heart rate is ridiculous, and my blood pressure is laughable. Thankfully in the last few days they have gotten my blood pressure better, the other two not-so-much. So until either of those show improvement, I'll be living at the Seton Luxury Hotel.
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#TeamBonnet Donation Garage Sale

4/22/2018

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A few weeks ago, my amazing cousin Abby said she wanted to put together a donation garage sale where all profits go to my cancer bills. She is definitely the queen garage saler unlike me so I told her I was in. We both started advertising and spreading the word to friends and family if they had any items they were looking to get rid of and wanted to donated to our cause we would love their donation! As I mentioned earlier, I am the worst garage saler AND haggler there is. If it's listed for $20, I give you $20. Abby, however, is a pro. Not only did we get so many beyond amazing donations to sale from a ton of gracious people, but Abby sold, sold, and sold some more! I was physically zero help at the moment with my recent cancer updates.  Two weeks ago I found out the 18 shots I have to give myself these next few weeks after chemo weren’t going to be sent to me until they were paid for. I ha to start them that next day so I wasn’t sure how in the world I’d ever scrounge up $1,600....yes, that’s $200 a shot.  Thanks to everyone involved, we made enough to pay for my shots! One of the many things I’ve learned since starting this cancer journey....timing is everything in life (good or bad)! Now here’s hoping I don’t pass out giving myself shots 😳 🤞🏻
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It Was Nice Knowing You Hair....

4/4/2018

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I've been putting off writing this particular post for a few weeks. 1: because I'm lazy and I know I won't be able to summarize it too well and it will be super long and depressing. 2: there were so many things I had to get done on my to-do list before everything was set. 3: the details were literally changing all the time so I felt silly saying one thing was happening and then the dr change it up and it not happen.

So, a couple weeks before spring break (end of February) I started gradually having some of the same signs and symptoms I had when I first got diagnosed with cancer in August. This was literally just weeks after I finished my 22 radiation treatments so I thought maybe it was just residual effects from that...but surely didn't want to think the obvious. I dealt with it for a couple weeks and it gradually got worse. There was really no point to tell anyone because I would just sound crazy and its not like anyone could do anything about it anyway. Not to mention I had JUST started my new job and the last thing I wanted was to start taking off to go to more dr appts. I waited till I was off during spring break, called my oncologist just to give him an update of what was happening and he literally sent me to get a CT scan the next day. 

My week started off with the scan on Monday, dr called for me to come in the next day and said the scan showed my tumor was still active and I now have more nodes/masses showing on the other side of my chest. I already knew what she was going to say before I got there so it was no surprise to me. Since it was during spring break, my oncologist was on vacation the rest of the week and his PA got me in with him as soon as he was back Monday. 

Here's where all the details got exhausting and frustrating. During this appointment he obviously couldn't 100% confirm it was cancer because you can't do that unless you biopsy the masses. Where mine are located can be a risky surgery so he really didn't want to put me through that and was pretty "convinced" that it was indeed a reoccurrence because I was literally having all the same symptoms etc, except more painful this time around. So we set up to start chemo again that following Monday. I let my school know what I found out so they could get a sub. I was under the understanding this chemo was only 2 weeks long so I could get a short term sub for two weeks then head back. Then the plans changed literally last minute and my oncologist wanted me to go see the chest cancer specialist to get his input before we started chemo. I then had to wait till the following week to get in with him. 

Once at the specialist it ended up being agreed upon (begrudgingly by me) to be 100% the new nodes were in fact cancer by going into surgery and getting all spots biopsied he could get to. This is how I spent my good Friday. It wasn't fun. I ended up getting two incisions when I thought I was only getting one (that may have been selective hearing though). One incision was on my left side and they had to go thru my ribs throughout my chest. The other was under my left boob, an obvious guy dr move because they think it will be a great spot because it will be a hidden scar BUT not thinking that a) boobs sweat and how the heck am I going to keep that spot dry and b) that's exactly where my bra hits...ie either go braless or go no where. The side incision was closed with sutures I have to keep in for 3 weeks and the boob incision was thankfully closed with surgical glue.....however that works out.
I was super sore for a few days and my incisions look oh so sexy. I was told I would get my results probably Tuesday. When Tuesday rolled around and I hadn't heard anything I contacted the specialist who did the actual biopsy to see if my results were in. The nurse called me at the end of the day to tell me the final results hadn't been uploaded but she went into the hospital side and looked it up and it was indeed a reoccurrence.....ie positive results of cancer. I basically paid over $5,000 to be able to say "I told ya so". My oncologist office finally called at the end of the day Wednesday to tell me I was starting chemo Monday (for real this time) and everything was scheduled. 

My first chemo round was called EPOCH. I will be doing a different regimen this time around called "RICE" which is typically used for reoccurrence patients. I will also be getting a stem cell transplant. So with that being said, it looks like I will yet again be having a super fun summer. I had to put in for catastrophic leave at work and am still waiting to hear if its approved. Yet again, the worst timing any of this could happen...but I guess you cant really plan if and when you get cancer.
Not sure how I will be able to pay for yet another round of cancer plus a transplant. I believe shirts are on the to do list and a garage sale....other than that I may start selling some appendages if anyone is interested...the non-cancerous ones of course.
Oh and I will yet again be losing my hair. Lots to look forward to.
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Hair Chronicles

2/11/2018

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I'll be taking a picture of my head every few weeks to chronicle my hair growth. Anxious to see how long it takes to grow and how it grows back. Maybe I'll be a curly blonde this time around ; )
​Disclaimer: NONE of these pictures are going to be flattering

Right after being done with chemo....ya, not much to see here unfortunately....zero eyelashes and eyebrows 

1-2-18

1-3-18

My Monat Plan

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1-5-18

1-16-18
Eyelashes and eyebrows finally starting to grow... head not so much

1-11-18

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1-16-18

1-24-18

2-11-18

People keep asking to see my wig since I never wear it...I hate it...but here it is...

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Fifty Nifty

1/23/2018

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Radiation:
No, you don't feel the beams going into you, it is just extremely awkward. You're laying on a table in your body form (not to be confused with body bag) and have your arms up by your head holding two poles. They open the top part of my gown to see my 6 markings they put all over my body to show where to line me up exactly each time (these markings and stickers have to stay on till I am done with radiation). You then get a belt...no not a belt at all.....you then get a girdle that they pump with air so you won't breath heavy. Let me just tell you, this doesn't help the breathing situation. If you're ever in an awkward position at a dr and they tell you to breath normal, the first thing you do is breath not normal...that's your brain laughing at you. However, in my case and where my tumor is (literally the worst possible location) one small movement and the beam goes just a millimeter the wrong way and it hits a pretty important body part such as my heart and esophagus etc.
With this being said, in my case it is extremely important I breath "normal". I couldn't do it the first time, I tried everything I could think of. My second treatment I decided to try and think of other things. I tried counting the tiles on the ceiling....but then ran out of tiles because I can't move my head to see them all, I tried to close my eyes and not think about the massive machine moving around me....nope still didn't work. Then I attempted singing, DEFINITELY not out loud because I wouldnt want to scare off any of the nurses...and well, that would mean my mouth would me moving anyway. So here comes the fun part. I couldnt just sing an easy song my brain knows naturally like the ABC's or Jingle Bells...I can sing those in my sleep. I had to think of something that wouldn't come easy and that would keep my brain thinking of just that and not multi task like I can with Christmas or educational songs : )
Don't ask me how or why, but I somehow started singing "The Fifty Nifty United States" song we learned in elementary school and performed in a school event. I'm not much of a geography fan and have only traveled to 3 states so knowing them by heart and in alphabetic order really isn't at the top of my priority list...I mean my brain would totally rather use that space for Christmas songs. It's a song i literally have to concentrate on to sing and so far it's helped focus on breathing correctly...because when you don't, it all goes downhill. Let's just say I am going to be an alphabetizing and state pro by the end of 5 weeks!

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YOU'RE DONE....nope, just kidding

1/19/2018

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My PET scan was December 29th. You get a PET scan to make sure your tumor/Cancer was taken care of with the intense chemo...if not, the fluid they inject you with will light your body up anywhere there is movement or growth. I had mine done basically the last day in 2017 so I knew it would be a few days to get the results with the holidays etc. By January 4th I still hadn't heard from my doctor so I gave his nurse a call. Was no news good news? 
The nurse called back about an hour later saying my Dr had just looked at the scan results this morning and he wanted me to come in the next day. To which I replied, "well I already have my appointment with him next week, can I not just wait and still come in then?"
Nurse: "No, he wants to see you first thing in the morning"
Lovely....that just sounds like great results are comin' my way!

The next morning I was at my oncologist. Long story short, the PET scan showed my tumor was still active, when it shouldn't of been with the crazy intense chemo regimen I did. Something about the SUVs (whatever those are) are supposed to be under 5....mine were 15. So I had 3 options, that weren't really options and all eventually led to radiation. So there I was with another caner treatment looming over me. I just THOUGHT I was done after chemo....ha, "just kidding" said life.
That very day I had to go directly across the street to meet with my new radiation oncologist, get fitted for my radiation form I had to lay in every time, and get the laser markings on my body that showed where to line me up each time and I had to keep these on the duration of radiation. Because if being bald isn't fun enough, lets just throw some permanent marker and stickers on you that have to stay there for 6 full weeks.
I unfortunately had to wait for a while to get insurance to approve radiation. The day it was finally approved, they literally got me in 2 hours later to do my first session. I have a total of 22 sessions, every day. If all goes as planned and the weather doesn't go crazy again, I should have my last session February 16th. I did however schedule all my sessions for after 4 so I can still get a job and work and just go after. Now more than ever I definitely need a job/income. Let the radiation fun begin and lets get this show on the road, I'm ready to REALLY be done this time.
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#Done

12/11/2017

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Today marks 2 weeks after my last chemo. Even though I was glad to be done, my last chemo was very anticlimactic like you see on tv. My location doesn't have a bell or anything like that, so it was just my mom and I sitting there with my last iv pumping thru then I was gone. I've still gotten sick and my body is still adjusting, but thats unfortunately whats to be expected and will be my new life for awhile. Imagine a 500 lb person who has been on bed rest for almost 5 months....ya thats my body at the moment.
I've been applying to whatever teaching job comes open to try to get back to "normal" on top of have a life and income again, but unfortunately there just aren't many teaching jobs that come open mid year. So we will see.
​

I'm Ready

~I'm ready for my hair to grow back 
~I'm ready for my body to feel "normal"
~I'm ready to have eyelashes and eyebrows again
~I'm ready to get my taste back drymouth be gone
~I'm ready to be off so many pills
~I'm ready to have an income again so I can pay my bills
~I'm ready for people to quit staring....yes, I'm bald
~I'm ready for my body to regulate temperature normal again
~I'm ready to sleep better
~I'm ready for all the feeling to come back in my fingers
~I'm ready for life to go on...

Unfortunately, all these things take time. I wish miracle grow would work on my hair....but that would literally be a miracle. I'm hoping in a year I'll have at least a few inches of hair even though I look horrible with short hair. Not looking forward to the porcupine look I'll have to go thru, but I'll take that any day if it means my hair is coming back!
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    "You either get bitter or you get better. It's that simple. You either take what's been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you."
    ​~Josh Shipp

             

    Archives

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    June 2019
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    June 2018
    April 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017

    When Cancer Comes a Knockin'

    Timeline

    On August 2, 2017, Brianna was diagnosed with Mediastinal Large B-Cell Lymphoma. Beginning Monday, August 14, 2017, Brianna will begin chemotherapy treatments. She will be commuting to Austin for 18 weeks to receive treatments. This site is set up as a donation page to help Brianna and her family cover medical costs and living expenses, as well as a one stop shop to get updates on how chemo is going and even buy a shirt or two in support!

    UPDATE:
    After getting her final PET scan to confirm the aggressive chemo did it's job, we got the news that it hadn't and that the tumor was still active when it shouldn't of been. Brianna is now undergoing radiation for 5 weeks, everyday in Austin. 


    UPDATE March 2018:
    Brianna begin having the same cancer symptoms as she did this past summer during spring break, except more painful this time. She was sent to get a CT scan which showed her cancer had returned. She then met with her oncologist who planned the next steps which include to do more chemo (a differnt regimen this time) followed by a stem cell transplant. 
    She thought she was done....she was done.....and now she is having to start the cancer journey all over again...including losing her hair that had just start growing back.


    UPDATE
    END OF MARCH - JUNE 25th
    ​(at the moment....things have yet to even begin apparently.)

    If I didn't feel like I was really dying or truly out of options to live....I do now. Remember  I was basically on our plan F and everything was just getting worse instead of better. I really thought I was done these last couple weeks and being in the hospital for another little week vacay. I finally updated by blog since so many people were asking, so you can read the detailed updates.

    October 2018 Update:
    Insurance has finally approved all of the CAR-T procedure and I will be getting my T-Cells retrieved from my body next week. (Oct 10th if all goes as planned)


    MARCH 2019
    The first post CAR-T pet scan showed the main mass has shrunk in size, even though still active. Hopefully, the CAR-T will continue to work its magic over the next few months before the next scan.


    To donate to Brianna's GoFundMe page, please make sure the donation is made on the GoFundMe Page found here:
    ​
     https://www.gofundme.com/teambonnet
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