A blog about Renee's journey through Cancerland. I'm a Stage IV breast cancer thriver, mommy, wife, and artist, learning to enjoy and appreciate life despite having a terminal disease. This is where I share my experiences and show you how to do the same.
They said, one day I would wake up and just feel good again.
I didn’t know exactly what they meant when they were telling me this because feeling good seemed like such a faraway memory that I hadn’t felt on a consistent basis for 8 years.
There was no logic...no constant...there was was no way for me to know how I would feel one day to the next. Some days I felt great, then the next day I was in bed all day from over doing it when I felt good. And on my most terrible days, I thought I this whole bone marrow transplant was the worst thing to ever happen to me...even worse than the 3 brain surgeries.
Maybe 6 - 9 months after my transplant, I started having a few more good days compared to the bad days. I still had no control over what days I would wake up and need to fall back asleep for an additional 4-6 hours, or wake up and feel great.
I was having about a 50% average for good days verses not good. There were varying levels for both the feel good and feel bad days.
Some feel good days, I was able to do an errand or two, OR go to the gym, OR lunch with friends, OR paint, OR write, OR watch TV or a movie and actually follow along with the plot. I say OR with such importance because I have to remember where I truly was to completely appreciate where I am now.
Some feel bad days, I simply couldn’t get out of bed because I literally had no energy. Think of the flu without body aches...just the pure exhaustion. I always tried to get up in the morning with my husband and son before school drop off, but some days I couldn’t. Other feel bad days I might just sit on my couch and watch TV all day or would be so tired that I couldn’t sleep which would make me nauseous so I would take a phinigrin which would knock out the nausea but also knocked me out.
Than around my 1 year new birthday, my feel good days got a little better... I could do a little more without crashing afterwards. I was still averaging about 50/50 feel good vs not, BUT I had more spunk on fee good days! I still had pretty bad days too, but I was getting used to this and knew after a few bad days, I would bounce back.
From this 50/50 point around 1 year post transplant up through today...which is 1 week shy from my 2.5 transplant birthday...have gradually been gaining more energy, more focus, mobility, and overall health.
I still have bad days, but I think I am at about 80% good days!! Every day is still different on the energy scale, but the energy swings aren’t near as dramatic as they once were and I can kinda tell before I am about to crash and modify whatever I need to in order to avoid a full crash...most of the time.
Back to what I said at the start of this story, they said one day I would wake up and feel good again... I have stepped into that reality!!
It hasn’t been anything like I ever experienced before with all the chemos, radiation and surgeries, so I never knew what to fully expect... I had no personal outline on becoming myself after bone marrow transplant.
One major lesson I have learned in these past 2 1/2 years of healing is I have the ability to choose what I focus on. Which in turn, can instantly change your turmoil to inner peace.... or cause a massive inner storm.
So what does all this mean?
No matter what you are going through, there IS something good to focus on. That something good might be hidden deep in you under years of hurt or sickness but I beg you to keep digging to find your sparkly peaceful energy amongst the layers of life settled on top of it because there IS something good to focus on.
I have been a crafter/maker for as long as I can remember. I have always drawn inspiration from anything that makes my heart smile.
The first time I was diagnosed with breast cancer is when I really started to feel an actual NEED for me to create. I felt this need to create after I noticed that while I was creating anything, my mind was at peace. I wasn’t thinking about how bad I felt from the chemo, I wasn’t thinking about all the “what if” stories that were continually running through my head, I wasn’t thinking about what a bad mom I was being to my 13 month old son, what a bad wife I was for all that I had to dump on my husband...I wasn’t thinking about anything at all except being in the moment creating whatever it was I was working on.
And it was those times when my mind wasn’t running all over me that I felt completely at Peace and whole and healthy.
For some reason, after I was “done” with cancer treatments, I stopped creating just for me. I tried to create items that I thought would sell. I thought since I was a stay-at-home-mom, I somehow needed to bring money in. So I thought crafts were what I “needed” to do. I quickly learned that me having to create was not peaceful...AT ALL.
Then I was diagnosed with Metastatic Breast Cancer in 2011, and once again I turned to art for myself as an outlet for my mind to escape for a little bit.
I started creating what I was craving in my world: HOPE. And what brought me Hope was bright, happy, fun, quirky stuff. From this need in my heart, I made my first “Hope Block.” After making some for myself and posting pictures, people started wanting to purchase some for themselves! Next, I had a need to share my go get ‘em attitude, words of advice/love, hope with others and that is how my first “CancerGirl” was born.
Since then, I have kept digging in my heart to ask: what stories, what words of wisdom, what lessons have impacted me the most, what lessons have I had to learn multiple times, what have I worked on to help me with my frame of mind and SO much more.
Now today, March, 30 2019 I have figured out what my next step that my heart as been craving should be: doing more of what absolutely lights my soul on fire! Literally, as I typing this, my heart is beating a little faster and I have this sparkly feeling in my tummy.
So what does that mean?
It means more bright, crazy-fun art that tells a story of Hope, Love, awe at Life, Joy and sparkly feelings. I want my art to be able to inject Joy into the person looking at it no matter what craziness is happening in their world. I want people to gain strength and Hope from my stories, and to know that same strength and Hope is there for them too.
I guess to answer my original question, what does creating do for me?
It allows me to create pockets of all I feel in my heart for others to see and hopefully experience some glittery feeling of their own.
Do you ever wonder if people who are dishing out advice actually practice what they are always preaching about?
Like with me...do you ever wonder if I practice my mindfulness tactics that I share ALL the time? My positive outlook? Or do you wonder if I am full of sh*t?!?!
I always wonder what some of the people I follow are really like...not just in the snapshot they post about.
ANYWAY - a little look into my crazy mind.
But, I do have a point here about practicing what I preach.
My positive outlook isn’t about being able to stay in a good mind space ALL the time...I am human....my mind runs out of control ALL the time still, but most of the time I can rain it back in...notice I said MOST of the time and NOT all of the time.
I have had a pain in my left boob for the past 2 weeks.
It is a heavy aching pain.
Monday, after pretty much bruising myself trying to feel for a lump, having had Eric feel, I broke down and called H for a referral for a mammogram appointment because I didn’t feel any lumps, no hot spots, no rash, no nipple discharge, no anything abnormal except for an aching.
I was able to schedule a mamo for Thursday.
Wednesday, scanxeity set in something fierce.
Crazy bad stories were running through my mind. What if scenarios were blowing through my imagination. I was on the fast train of anxiety heading to breakdown. I couldn’t eat, I was waking up in the middle of the night, my stomach was a mess and all the other fun stuff that anxiety likes to bring along.
Thursday I had my 3 month appointment with my oncologist GYN. I asked him if the low dose estrogen he prescribed could possibly be making my boob hurt because I haven’t had a period in over 8 years so my body isn’t used to actually having estrogen side effects...something in my heart told me to ask him even in my mind I sounded crazy!
He said absolutely that could be what is causing the aches.
In that second, I felt in my heart that all is well!
Seriously, I could feel the vail of fear I had been looking through fall from me.
Hearing from a trusted professional that my oh so hopeful theory very possibly could be what is actually happening and causing the pain, well, I was flipping estatic. I floated up to cloud 9 and was able to stay in that mind space through my mamo and sonogram appointment (I have dense breasts, so needing a sonogram is nothing new to me.)
Even when a lady came into the waiting clearly upset, I was able to not take on her energy...I was able to firmly stay in my own cloud 9 headspace while I wrote some short stories in the waiting area. (TIP for appointments: take something with you to do that you enjoy...phone scrolling gets old and IF you are in a worried mind space the phone scrolling makes it makes you even more anxious.)
After both the tests were done, the tech came back in with a smile...NOTHING TO SEE!!!
And when I was walking out, a sweet nurse stoped me because she recognized me from the last time i was in there to see how i was doing...it was great to be able to say that I am doing amazing!
So this is to let y’all know that yes, everyone has stress, maybe breakdowns (maybe that is just me?!?!), that unexpected sh*t happens to everyone...that keeping your mind in a good place is a practice. It takes work, dedication, practice, more work, more dedication, more practice...it is a never ending journey. And when you fall off the positive outlook path, know that you can get right back on it with one simple shift in your outlook. One simple change in the story you are telling yourself...it is up to you and you alone to watch/listen to your thoughts and call yourself out on your own bullsh*t!
I am SO freaking proud of myself for being on day 42 of doing a daily mala meditation.
I have been craving a meditation practice for I don’t know how long. I have started and stopped many different meditation practices before now. I have taken part in the free Oprah 21 days, I have bought different programs, followed other guided meditations, tried color mediation, and many more I can’t even remember now. But none of then stuck. I never felt totally in love with whatever type of meditation I was doing...I never looked forward it...I never craved that time on my meditation pillow.
That was until my coach Meg told me she wanted me to try doing a mala meditation with the words “ease and flow.” These words were something I said in a conversation with her about I want life to look like. I said, “ease and flow in all I do!”
BOOM...there was my mantra I was going to use for my daily meditation.
I told her I NEVER knew it could be THAT simple. I always thought it had to be some long verse of Sanskrit....like what Deepak taught on Oprah’s classes.
It just has to be from the heart and soul!
A few things I have noticed about myself in these past 42 days:
I am calmer.
When I get pissy about something, I am asking myself to understand why I am pissy MUCH quicker than I did before. I have figured out, it is usually because I am feeling out of control in one area of life and I tend to get pissy with those closest to me (husband and son).
I have more energy and drive.
I have been knocking stuff off my to-do list like crazy! I have cleaned my art room, gotten rid of several bags of things that were no longer bringing me joy, writing or doing art more, craving healthy food!, seeing more Angel numbers, feel closer to Spirit, and just overall better.
I have more sparkly moments throughout my day!
What is a sparkly moment?
To me, it is when I literally feel sparkly energy in me. I will explain more later, but for now try to imagine when you FEEL love...like when you how a baby.
Last benefit I have noticed is, I am able to focus and stay focused on a project!
I am loving these small, but oh so awesome shifts in me.
Here I am, sitting at Dr. H for my 6 week appointment. As I sit out here in the waiting room, I am telling myself to breathe and send loving light to myself.
I have had an emotional past few days. And a slight headache from crying...it hits me sometimes how not all put back together I am.
And I wonder if I will ever be put back together better than I am now?
I have come to the realization that I will never be put back together how I once was...it just isn’t possible.
Too much has happened.
I can’t erase my memories.
I can patch my cracks, but they are still visible.
I never know if my patches will hold...and for how long?
I realize that the way I have been living in this “other shoe is going to drop” feeling for...well, I don’t actually know how long...at least the almost 8 years living with MBC. Living with that looming over my head has really f*cked with me in more ways than I realized.
I started talking to a new kind of therapist in addition to my normal one. My new one is more of a coach...she gives me assignments to go within and search myself for the answers...this is HARD work.
I don’t know exactly what part of what I have done is what flipped the switch on for my inner flashlight to really shine on my cracks that need some TLC.
So, with me doing all this inner work has made me more emotional than normal....which I totally get - there is healing that needs to happen.
Anyway I had an appointment with Dr. H.
Something about being there with her, ALL my shields come done...and I mean all...I can’t hide the truth from her...I have tried but something about her makes any shield I have disappear....poof - gone!
I was in an emotional place anyway from doing all this self-work and seeing her was the straw that broke me all the way open.
She told me she can’t imagine. She sees how hard it is on me to be both this medical miracle but one who has lost so much while being this miracle. She also told me that I have to remember I have been doing this for 10 years, yet I expect for me to get better in X amount of time. I compared her saying this to something I heard once about relationship breakups - it usually takes at least half the time of what the relationship was to completely heal...and no, I don’t know if that is actually true.
I got home and cried more...I was grieving for all my friends, my self, all that was. BUT somewhere in all that grief, God sent me a life raft to help me back to shore.
I realized how ok I actually am.
How me being able to reach inside, find a feeling that is hurting me - look at it feeling/story, love it for teaching me something and move on. I can lovingly leave these memories in a special box that I don’t have to carry around with all the time. I can hand that box to my Angels, ask them to hold it for me, and if I want to revisit it...it will be protected and there for me.
I don’t want to erase what has happened...there is NO WAY I would be where I am now without all that has happened.
Oh, and I got bumped up to 2 months in between appointments!!