Hey y'all... it's me...
This blog is going to be a vegetable soup of topics so I hope you are able to follow along as I
ping pong around the words in my head. First, let me say that I am
failing miserably at one of my 2018 intentions BUT before you close your
browser and think oh shit, she's whining again, let me say this is a
good thing. I'll explain - at the start of the New Year, I made a list
of "intentions" rather than a resolution with the idea that an intention
is a more positive minded, friendly way to kick your ass into gear with
a new year. I wrote out a plethora of intentions, some small, some
big, and some, well, rather fluid. One "intention" I had was to blog 2
times a month and in the beginning, I was beating myself up for not
hitting my goal BUT I have come to realize this is one of those more
fluid intentions as I need to stay true to writing what is in my heart,
mind and soul and not worrying about conforming to a schedule. PHEW -
done and done. I feel better already.
My
last post was about hitting the amazing one year milestone and my NEAD
status. Nothing has changed in this moment so that's a good thing!
Except, except, except... I woke up one day and was like WHAAATTT - I'm
over this. LOL, seriously I said those words not because I was feeling
sad or deflated but simply because this cancer business is getting
monotonous and sometimes tiresome. Now I know that sounds like I'm being
a baby but I don't mean for it to be so. I relate to this feeling the
same way someone might look at their job. Now unless you are a famous
movie star or director, a model, an artist or simply someone who is
fortunate enough to have their dream job (ahem Jianna, if you are
reading this) in which they are able to fulfill their deepest passions
everyday (get your minds out of the gutter) - then you know what I am
talking about. It's sort of like the donut commercial where the guy
wakes up everyday in the middle of the night and mumbles "time to make
the donuts" and you can tell this goes on day after day after day.
There are moments where I feel like that donut guy - minus waking up in
the middle of the night.
My
main job is to keep myself living a thriving life. I do this in a
variety of ways that appear to the outside world as a pampered princess
life (I mean the world who doesn't know me and my MBC). Sometimes to be
fair, I feel a little indulgent, those are the days when I am feeling
the MBC less and then, there are days when I am impatiently waiting for
my next self care appointment because I feel as if the MBC is eating me
alive. It is so easy to want to chase the hope, there are any number of
ways those battling this disease practice self care. It can be easy to
fall into wanting to do what every person with longevity is doing. This
is where listening to what resonates with me, listening within -
another mantra comes in handy. Nonetheless, I realized that everything
I do, even living mindfully and spontaneously and my life list
adventures all have but one purpose - to help me thrive. That has
become my new job, my mantra. I split all of this up with family time,
social time with friends, and quiet introspective time. Either way I
look at things, it is both good and sad. I have accepted my role in
living and have decided to pursue this with a healthy dose of passion
and reality. The sad side, is the job itself - this isn't a job anyone
would apply for nor seek out so with that comes more acceptance and
reality. And with one full, amazing year under my belt, I realized this
is my job for life because my life is completely interwoven with my job. Does that make sense?
Now
for some public displays of mental breakdowns - I can laugh about it
now but OY! As my milestone came and went, I began to feel more of the
weight of what I carry everyday, the ups and the downs. There are days I
think I should be as strong as any super hero out there and then days
when I think I am as weak as Tinkerbell. To say there is an emotional
swing in my moods is an understatement, I can cry at the beauty of a
flower or yell at that same flower for making me sneeze. It's anyone's
guess and it can change on a dime - the emotional pitfalls of MBC,
menopause, being a parent, being a wife, being overly tired BLAH BLAH
BLAH!
So
one day I was planning an outfit in my head, I had broke down and
bought this really cute and "outside my box pair of pants" and in my
head these pants were the main attraction of this planned out outfit. I
had somewhere to go where I needed to feel as much myself as ever, I
needed the confidence I would get from pulling off that planned outfit.
Come on gals - you know what I am talking about - right?? Much to my
dismay and horror, I found a snag in the pants and had to exchange them
for a new pair. (Now to my defense, I just had some bad news regarding a
useless rental house we are trying to sell and I was frustrated - keep
that in mind while reading further). I walked into the store - Evereve
in the little town where I live and they were as sweet as could be
however they didn't have the pants in my size to exchange and neither
did any of their other stores in a 50 mile radius. Suddenly the planned
outfit I had pictured in my head was going up in smoke - along with my
confidence, my rationality and every other sense I had. So right there
standing at the counter, I burst into tears and began to overly dump my
story, troubles and woes. I didn't give a hot damn who saw me. They
had already planned on shipping me the pants but there was no guarantee I
would have them for the day I needed. Well, bless Simona and Lisa's
(store managers) sweet hearts because they listened, they empathized and
then they let me take back home the snagged pants (you could hardly see
the snag) so I had them as back up. And for me, in that moment and in
the moment I put on my planned outfit, they were my angels.
I
realized after my senses, rationality, and confidence came back, this
type of kindness (now they were probably scared and just wanted me to
stop crying) but honestly, this undeserving kindness is exactly what
really helps someone who is just having a shit day. And it is this that
makes me pause and think - most people are not going to fall apart in
public over anything. Most people will carry their sadness, fear, or
grief deep inside themselves until they are frozen and paralyzed. I am
not just talking being upset over a trivial pair of pants but it could
be anything, trivial or monumental and most people will not say
anything. I believe it is our job to do whatever we can to be the
angels of the world for whomever crosses our paths because we sincerely
do not know what they are carrying. And if we can help one person find
that one thing to help them gain perspective and comfort, even if its
only for a brief time, then we have helped to make another persons'
heart feel better. We live in the eyes of God (or whatever you believe
in) and with that mind we can choose to bring more kindness into the
world. Now for me, one thing I did was march my little ass back into
that store the following Monday, not only to thank them and apologize
for my over sharing but also to hand them a mantra block and say use
this the next time you are having a bad day. Put this in your back
room, flip your block to however you're feeling and hopefully it will
make you smile, especially the next time a customer comes in crying over
a pair of pants.
That is just one example of me falling apart at the most inopportune times. I don't think I
realized how much I continue to carry inside. I think there is part of
me that tries to shut it down, I mean it's been a year! A whole
frickin' year and I plan to be one of the outliers - one who lives with
MBC for 5, 7, 10, 15 to infinity years with this disease and I don't
want to alienate every person around me because I can't let it go. So I
fall apart to strangers, or I cry on walks by myself, or I quietly get
up and leave a senior celebration because just wondering if I will make
it until my son is a senior paralyzes me, or I hide in the bathroom, or
cry during mass. I am not sure how to handle this part of my journey. I
know there are some people who don't understand why I am even still
standing here, the terminal side of this disease is a broad topic. MBC
is terminal but there is no specific expiration date and carrying the
unknown wonder can both be a marvel and a burden.
Dr.
K and I recently chatted and my answer to how are you feeling was "same
old shit, just a different day". I wasn't trying to be trite but the
sleeping side of cancer doesn't abate the side effects both physical and
mental of MBC. Those are the things Dr. K cannot control, it is a bit
of collateral damage you accept with MBC treatment. Sort of taking the
good with the bad... oh no, now I am singing the Facts of Life theme
song! We talked of my next set of scans, when to do them, what scan he
thinks is best and he honestly wanted to know how I was feeling and what
I was thinking. My answer was "today is a good day so I feel somewhat
ambivalent but catch me on a bad day and I will want to sign up for
every scan, x-ray, MRI, nuclear medicine, radioactive whatever that is
available, it will be like I am signing up for spa treatments - give me
the works"! I think this speaks to the journey, how it continues even
with life moving forward. And how some days MBC is a quiet hum in the
background of my life and other days it is like Ozzy Osbourne is
"screaming" the MBC anthem song in my ear all day long!
I
do believe some of the novelty has worn for not only me but most. I
have always said this is going to be a marathon rather than a sprint of a
journey, I don't think I thought about all that comes with that. It is
important for me to continue to find adventures, thriving moments and
milestones, and peaceful acceptance of this journey. A harsh, scary
truth is that everything can change so fast, progression will come,
different drugs and side effects will be introduced - the when is
unknown - I am thinking somewhere around the year 2050 will be good for
my schedule. How will I continue to make the positive moments happen;
by continuing my new job of self care, practicing my faith, and living
my truth to the best I can in the moment I am standing in while
abandoning my fears and worries. That sounds like a mighty tall order
but I know in my soul, any attempt at living this truth will help
sustain me longer and farther as I walk my journey each and every day!
Peace ✌,
Jo
I feel exactly the same...thank your for expressing it so eloquently. Giid days...bad days. Stage 4 sucks
ReplyDeleteThank you for reading. I wish you more good days than bad and the peace and strength to face the bad ones. Stage 4 does absolutely suck!
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ReplyDeleteHi Jo, I just started reading a book by a Christian author Christine Caine. She had cancer of the thyroid, the book is called Unexpected. I think you would like the book, she talks about when the unexpected comes along and how to walk those unexpected things with God at your side. I have heard her speak a few times and I get something from her every time I hear her and I have read most of her books. Very inspirational. As always you continue to be in my daily prayers. Kim Clancy
ReplyDeleteThank you so much, I will look into the book, sounds like a good read. Thank you for the prayers and for sharing in my journey.
ReplyDeleteAs always, thank you for sharing. Your generosity with your personal journey is beautiful. Something you said struck me: "the unknown wonder". While the unknown part of your burden is scary, I also think it's the "known" that's frightening. I wouldn't want to be told how I'm likely to meet my final fate. Now I know, you could get hit by a bus (surprise!), but you kind of "know" something about something... That Which Must Not Be Named. I think it takes incredible bravery for you to share your thoughts, your breakdowns, and your fears. The real unknown is the "when", and I'm rooting for at least that 2050 mark, and for all of us to be rolling our eyes (if we're lucky enough to still be here), saying, "Oh, jeez, there goes JoAnn, again..." x o
ReplyDeleteLove love love this, you get me, you really get it. Thank you so much.
DeleteI'm glad you said that, because I thought my humor might offend. But you have a deliciously dark sense of humor, too! As always, wishing you health and peace of mind.
DeleteNo worries Mary, thank you so much :)
DeleteJo,
ReplyDeleteI absolutely love reading your blog. It resonants so much with, what I think, a lot of us are going through. I laughed at your perfect outfit breakdown story because it's so real and I thank you for having the courage to share your "realness" with us.
I'm grateful to still be here, but at the same time, I'm so over having MBC...enough already! But I'm willing to accept the more good days than bad!
Keeping blogging, Jo, and I'll keep reading!
I am so touched, thank you so much for reading. You made me smile tonight and I’ll be honest and todays been a shit day. LOL kelp in keeping on my MBC sister. I will if you will? I’m so glad my writing is making you laugh and resonating, so often I feel like I must be the only one who... it’s nice to know I’m not alone. Peace and blessings to you on your journey. 🤗. I’ll write more soon.
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