Wednesday, January 16, 2019

Today - MRI

No matter what I do to prepare myself for scans, the second I walk into ARA my heart starts beating faster and my breathing becomes shallow.


As I sit here writing this, I am intentionally paying attention to my breath....in and out, in and out and visualizing the excitement I will feel when I get the MRI results back.

————-

I am now home and am exhausted with a contrast headache. Contrast is basically a fancy dye they give by injection. And yes, I always get headaches.


BUT there was a new MRI guy who is a rockstar! He got my IV needle with the FIRST stick! Yes...that is a rarity. I told him he was AWESOME and he told me he used to work with children getting MRIs. He is an Earth Angel.


While I was laying in the MRI machine, I was visualizing my Angels holding hands around me and a soft sparkly light in my healthy body all while saying “thank you for every little cell in my body being healthy and well.”


Now, I wait for my results. I don’t see Groves (brain Oncologist) until 1/29 or H until 1/24. H always calls me after my body scans, but my brain scans are crazy to read because of all the scar tissue, so I usually don’t get the results until at Groves. I will ask H to try to read...we will see!


Monday, January 14, 2019

Yin/Yang of my weekend

Yin/Yang of my weekend


This weekend was a complete yin/yang of life. Some awesome/some not.


I am not good with dates on the calendar. I usually don’t realize/remember what events happened on what date. 🤷🏻‍♀️ I know things are around certain dates, but I usually don’t remember the exact dates. 


Saturday I went over to one of my friends houses for her birthday get together. These are my neighborhood family. These girls in my hood are some of my strongest rocks in my life, defiantly the group of friends that make me laugh the hardest, and understand my struggles with all the ups and downs I experience because they are the ones I call on for immediate help.


Per normal, we had a great time. We laughed, talked, ate and loved on each other while celebrating our friend.






(Top picture is a party picture and bottom picture is the canvas and card I made and gave for J Birthday gift.)




Sunday I went to Autumn’s house to do a clean cooking lesson with one of her friends. 








Backstory: I met Autumn through Holley. Holley was a lot like me - she had several groups of friends who didn’t know the other groups well. Although, the last time Holley was in the hospital, all the 2 groups met and a few of us fell in lover with each other, and formed our own friendships.


3 years ago was when Holley passed from Metastatic Breast Cancer (MBC). She was the first out of the 5 of us Lifers who passed away from MBC, and it hit us hard...HARD. For some reason the 5 of us thought the MBC was going to treat us all differently. 


It didn’t.

Expect for me.


Back to yesterday.


I had a small breakdown yesterday after getting home from our cooking class. 


I started thinking about how in 3 short years, I have lost 4 best friends and numerous others MBC girls from our large group here in Austin. 


It never gets easier when I sit down and let the questions blowup in my head: why did theirs progress the way it did, why did some of their treatments work and not others (all the questions we need answers to), why did my treatments work, what about their families and on and on...this is why I don’t let myself venture downs this hole very often...it is a sad and scary place to be.


So I cried a lot last night. 


I cried for Holley. 

I cried for Kelli.

I cried for Courtney.

I cried for Kristi.

I cried for myself.


I needed that cry. I needed to let all those emotions I still carry around with me go because they still f*ck with me. 


I decided that me letting the emotions go doesn’t mean I am forgetting them. It means I am doing what I need to do for me, and that is ok.   


Monday, January 7, 2019

Keep going, Keep growing

Keep going,

Keep growing


These past few weeks have been hard for me...for several reasons.


Me having a GVH flair up around Thanksgiving, got a bit better, caught a cold that moved to my chest, Christmas break, the pressure I put on myself to do things, and not feeling like moving my body much...all of these have slowly been chipping away at my mind and spirit.


I am no stranger to this. Not being a stranger is a double edge sword. 


On one side, it is great to know that it is “just” a flair up...I have had them before, I know how I will feel, and it takes about 3 weeks to feel how I felt before said flair up. On the other edge of the sword, it is so freaking hard to accept these ups and downs might always happen?!?! No one knows.  🤷🏻‍♀️


Having GVH flairs is a pain, BUT I try to remember that it is a flair from a life saving transplant and I shouldn’t b*tch and moan about it because, well - I am alive!


Seems simple enough.


It isn’t always that simple when the thoughts are churning in my mind.


As I sit here writing, after having a small breakdown to my husband about how now that I am feeling better and the holidays are over, I know it is time for me to start over again.


AGAIN - Start over on all the things I had going before my flair that started my downhill slide.


All the things that are hard and overwhelming at first. Things like walking 20 minutes a day, doing PT, doing PT on my vagina, going back to therapy, back to essentrics classes, paint more, cook, and the list goes on.


I am trying to remember that I am only on my ramp up section of my “coming back” list. Yes-I have it broken down into sections because if I don’t I become overwhelmed, and freeze like a deer in headlights. 


It is hard to remember that there are steps to my comeback. To truly remember the steps verses how I think I remember them (hence why I write everything down SO I can read my own words about what actually happened). 


I go back to all my writings during my comeback climb every time. Usually after my husband reminds me that I am on the comeback list phase and I have felt this same way every time...overwhelmed, frustrated, sad, over it all 🙄 BUT somewhere in all that crazy energy, I find a way to keep taking steps in the right direction....even when those steps are tiny.


Here’s to doing it all again.

Thursday, January 3, 2019

Learning something new

Learning something new




I don’t always realize how stubborn I can be. Especially while I’m the moment of being stubborn... I will dig my heals into the ground and get pulled across a field just for the sake of me not wanting to surrender to whatever it is I am fighting.


Now, don’t get me wrong - this stubborn attitude has gotten me far in life - in SOME areas. I am going to hold on to that stubborn side of myself - ain’t no one going to take that fire from me! 


But the other side being stubborn is getting on my nerves. I think it is because as I watch my son grow through adolescence, his stubbornness about things he THINKS he already knows...the ins and outs of EVERYTHING. 


EV-RE THING 🙄


So that is what made me start taking notice of my own actions when learning something new.


I have said too many times: 

  • oh, I already know how to do that
  • I have done something like X before, so this will be no problem and I don’t need to listen  
  • what else could I need to learn?


If you don’t see that pattern here, it is me being too stubborn/too proud to admit I DON’T know it all, there are SO many different ways to do one thing that I should not assume my experience is the same as someone else’s,  AND everything takes practice!


I have watched art videos and honestly thought I should be able to paint right along with the TRAINED artist who has done said technique for who knows how long. And that my FIRST time painting this way, that my painting should turnout as great as the teacher I am watching. 


It sounds completely ridiculous to me right now while I am writing this out.


Because why on earth would I think I could spend 1 -2 hours working on a NEW style of art and have it mastered?? 


I shouldn’t think that.


I need to recognize the hard work, time, energy, thoughts, heart breaks, joys, frustration, glee and everything else that I know goes into learning and mastering something.


I have done it before in other areas of my life, so I need to remember to look back on those times when I had no idea what I was actually doing, but kept at it, kept trying, kept tweaking, kept on keeping on...with determination to get to wherever was I had my sights set on.


My first thing I am dedicated to learning in 2019: Rome wasn’t built in a day. Yes, silly analogy but oh so true. Every great thing, every great person, all the great lessons out there being taught by people who have walked the walk...all of this is teaching me that I will not actually get anywhere without simply taking one step at a time.


Can it really be that simple?


I don’t know, but I am going to see?!?!

Wednesday, January 2, 2019

A love note to myself

Renee


You are truly amazing.


Your sweet spirit fills any room you walk into with a peaceful sparkling light that others can feel in their souls. 


Your light radiates from deep in your soul and when I look, I can see a direct connection to Spirit.


I love being able to support you in any and every way I can.


I love sharing your work with everyone I know. Your work has helped me grow into the person I have always wanted to be, and I am so excited and grateful to be able to share your work, passion and love with every one I know.


I can’t wait to see the ripple effect of love radiate out around me to others.


❤️❤️




The above is a thank you note I wrote to myself from my future self...the kind of note I envision receiving from someone I have helped along the way.


Truth be told, it was hard for me to write this to myself. 

HARD

It was hard to compliment myself, it was hard to believe in my work as an artist and author...it was just flat out hard.


I am going on an inner journey this year. I have decided that I am tired of repeating old patterns, I am tired of living in the past with what I was able to do/what I cannot do verses all that I AM able to do, I am tired of apologizing, I am tired of guilt I sometimes can’t shake...I am on a journey to find the whole me of NOW and let go of the past pieces that no longer serve me.


Here’s to what might be the wildest ride yet?!?! 🙄 (I can be so dramatic)


Wednesday, December 5, 2018

Bone Marrow Biopsy, Chest/Abdominal CT and Bone Scan results

Bone Marrow Biopsy, Chest/Abdominal CT and Bone Scan results


I just realized I never actually wrote a blog post for this...I did a video but not a written post...so for some of you this might be old news!


I had my semi-annual CT and bone scans. All is still NED!! (No Evidence of Disease)


I still get many questions about how this is - clear scans but still classified as Metastatic Breast Cancer. Well, once someone is classified as having MBC - it never goes away BECAUSE it had spread outside the original tumor (in my breast) it can always grow again. I don’t sit and dwell on this possibility, BUT believe me it crosses my mind more often than I want it to.


My Bone Marrow biopsy came back great too!! Meaning, my new bone marrow (from transplant 2 years ago) is making itself all nice and cozy in its new happy home - me!


Another question I get asked a lot too is about this flair ups that take me out from time to time - will I always get these? 


I honestly don’t know. There is something called chronic GVH, but there is nothing to really do about it until the flair up happens. SO I am still learning to roll with it.


I have been NED in my body for 7 years, NED in my brain for almost 5 1/2 years, and pre-leukemia free for 2 years!


I share my CrAZy story like I do for several reasons: 

 - Show you that anything really is possible 

  • I need to remind myself of the awe in my story because let’s face it - my story doesn’t follow the “normal path” of a Metastatic Breast Cancer thriver 
  • It makes me feel good to know that my story inspires others.


Please let me if you have any questions about the road I have walked. Sharing tips and tricks of how I have changed along the way (both good and bad) is something I hold dear to my heart to know I can help others from the comfort of my own home!


Trending back up

Trending back up


I am coming out of the fog that has been wrapped around me for the past 10 days from a GVH (graft vs host) flair.


I always look forward to this day when I am in the middle of a flair and crazy thoughts are starting to pop into my mind...thoughts like: sh*t - do I feel worse than I did last flair, how many days have I been down this time compared to last time, is my foot harder to control and on and on.


Yes - even with all my “find a positive in every situation” practice - sometimes it is hard to remember to mind my thoughts and they quickly spin out of control.


Today is my first day in 10 days that I haven’t slept over 14 hours (minimum). I can’t say I am totally awake and alert at this very moment, but I am not sleeping - I will count that as a win!


My first steps on my coming back list are:

  • Showering (I know it might sound silly, but when I am having a GVH flair, even showering I super hard because of all the energy used)
  • Writing
  • Being social (I usually don’t even talk on the phone much when I am in a flair because I just don’t have any extra energy to spar.
  • Walk or go to essentrics class. 
  • Art
  • Cook



I have to use this coming back list; otherwise, I look at my big goal of getting back to where I was and freak out because it looks so overwhelming.


So, here is to my first day of this come back!