Hey y'all...it's me...
Here is my latest, I hope you read it with
happiness and peace. Take a moment to look around and recognize the
sweet angels in your life, those who are adding to your cup of love and
feeling the whispers of of a loved ones passed on. We never know when
an angel may cross our paths, I was lucky enough today to have 2
unexpected welcomed hugs from angels in my life.
As always, I
treasure your continued support, reading, sharing, and helping me spread
my words to anyone who might need some light in their life.
Peace,
Jo
Living Beyond The Color Pink...... an organic, evolving journey.: Angels Among Us: Hey y'all...it's me... I have been dealing with some writers block lately. My writing is so connected to the ups and downs o...
Friday, July 21, 2017
Angels Among Us
Hey y'all...it's me...
I have been dealing with some writers block lately. My writing is so connected to the ups and downs
of my emotions. I tend to write more on the downward spiral of a bad
day then the upward high of the emotional swing. I think that sometimes
I feel if I am just living, going about my day, doing my thing - that
no one is going to want to hear about my laundry, car pools, or doggie
dramas (one house, three dogs... that's drama). But today I am on a
high - a good high that I want to share.I believe in angels, 100%, hands down. There are quiet angels who are cheering us along in each of our journeys, helping us choose our paths, lessening our burdens and whispering the love and support of our loved ones who have left us too early. If it weren't for these angels, these little signs I get daily from loved ones near and far, my path would be rugged. I am so blessed to have the encouragement and inspiration of others, each message, each gift is filled with generosity that quieted this loud mouthed, Italian girl this week and filled my eyes with tears of sweet happiness and relief.
It is these feelings, this positive state of harmony that I plan to ride into and through my nuclear bone scan on Monday July, 24th. Get ready y'all, because once again I will be filled with enough radioactive isotopes to make me glow in the dark but all for a good reason. The doctors will be comparing my images - over 900 of them - from this scan to the first scan in April which catapulted me onto this journey with the hope in finding "healing bone" which would be indicative to remission. Now if any of you know me, you know that I can be a tough cookie. I like to call the shots, plan the play of the game, and be in charge of everything all at once. So there is no surprise or major shocker to know that I did my best selling pitch to Dr. K, pleading my case as to why I should be signed up for every scan, imaging test, X-ray, MRI, CT, PET, XYZ and PDQ (as my Dad would say). I just want to know...
The thing about metastatic breast cancer (MBC) is that it is forever. We've talked about that before but I know it is a hard, abstract concept for many. Hell, it's hard for me too. But since it is forever, there will always be a 3 month check or sooner if something comes up. There will always be a little bit of breath being held tightly in my lungs wondering if the medicine is working, if the prayers are working, if anything is working. Knowing this, in spite of this, I am still on a high. It is this high, this feeling of normalcy or not feeling the cancer, not feeling anything other than normal 47 year old feels is what is adding wind to my sails and allowing me to float down the path for a while.
It is the generosity of strangers, of those who make up the thick and thin branches on my tree of life that is adding to the high. It is the compassion of one of John's customers saying a prayer for me while we were on the phone together that is adding to the high. It is my client taking me to church and quietly sitting next to me offering me his strength and stability during his hectic work week that is adding to the high. It is fun lunches with girlfriends talking about everything and anything besides cancer adding to the high. It is my sister visiting, laughing with family, cleaning out my pantry, and doing those little tasks that have been left behind adding to the high. It is all of it combined. Those who love and protect my children, welcoming them into their lives with kindness and a safe harbor. It is so much - my cup, my heart and my soul are filled with light.
Being positive is a state of mind... Oh hell, I am becoming a cliche but it is so true and it is hard work. This journey is taking me down a mindful path, I am evolving in a very organic way. Now none of this is to say that once the test is completed and I have exited the hospital that I won't go running back in, begging and pleading the radiologist to just tell me something. It will be a week before my results come in as Dr. K will be out of town. And since hiding in his suitcase would be considered creepy, I hope to put into place the mindful practice of using this high, this positive state of mind to help alleviate the stress of not knowing. I want this high to quiet the cancer bitch and duct tape her mouth shut so I can continue to live hopefully, without fail of expectation.
And with being on this pursuit of positive truth, I took the editorial advice of a dear, sweet family friend. While he graciously helped me work on a piece of writing, he suggested we change my NOT BUCKET LIST to be called my LIFE LIST. This subtle switch in words changes a negative to a positive - invoking positive energy into my list of wishes. I have been asked if I would ever share my list and I have with some privately though not yet on here. I never want to seem as if we, my family, are asking for anything more than love, prayers, and hugs. This burden, this trial or test of faith is ours to carry and while we may share the story, we never want anyone to feel they have to share the burden. My LIFE LIST is full of wishes for experiences to be shared with my family and friends. An exchange of love, shared memories, and positive images to help all of us move forward on this journey, no matter what lies ahead.
Peace ✌
Jo
Wednesday, July 5, 2017
Living Beyond The Color Pink...... an organic, evolving journey.: Smack with a frying pan
Living Beyond The Color Pink...... an organic, evolving journey.: Smack with a frying pan: Hey y'all...it's me.... It has been way too long and I am sorry for that. I don't know why there has been a lag in my writi...
Smack with a frying pan
Hey y'all...it's me....
It has been way too long and I am sorry for that. I don't know why there has been a lag in my writing, some of it is simply life moving way too fast and some of it is a little bit of a reality bite in the ass. Nonetheless, here I am ready to pour it out, dust my self off, and allow the prayer warriors, energy givers, and faith believers to do their magic for me. I know, I know, that is egocentric, slightly narcissistic, and selfish but please believe me when I say, I think of all of you, pray for your kindness and pay it forward in every way possible. Hand to Bible, I do!
Life has been moving at the speed of light. I woke up and it is July, half the summer is over, there were Christmas ornaments and decorations in the store I was in last week. What the hell man, the witches and goblins haven't even graced my doorstep and you are dancing Santa Claus in my face. Slow the fuck down world....I guarantee the powers that be who run the stores, merchandising, and marketing are not staring down an expiration date as people like me face daily. They are not thinking of living mindfully, embracing the moment, and singing Kunbaya in the rain. It is just another mind fuck for me....slow down but oh wait let's plan our Christmas table decorations before we even carve a pumpkin.
So what's the skinny in my world these days. I woke up last week and was smacked in the head with a cast iron frying pan. If you recall, and its totally cool if you don't but I never shared the actual number Dr. K gave me back when I was given my treatment protocol. There were a couple of reasons for that. One, I didn't want my kids to dwell on it and two, I wasn't ready to think of the progression of metastatic disease. I wasn't living in a bubble, I just think my brain was still protecting me from a kick in the ass of reality. I mean, I knew what metastatic meant but again the mind fuck was that once I started my chemotherapy pill, I was feeling better not 100% great but definitely better than the bone pain, fever and lack of appetite I was experiencing prior to my diagnosis. For the past 2 months and through the first 2 round of chemo, I was working hard at staying in the now, being mindful, doing healthy activities, finding the egocentric place a cancer patient has to live in at times in order to survive the healthiest possible life they can.
We all know that during those 2 rounds, I battled head to head with the cancer bitch and often feel I was the victor in many of those rounds. I may have periods of being low but I always told the cancer bitch to stop, sometimes out loud, talking to myself in the car, on a walk, or standing in the middle of the store. So if you are hearing gossip around town about a short, red headed lady babbling to herself...it's me...I am the crazy one talking to the imaginary ghost standing next to me. I don't think twice when people look at me funny or take a step back, if I have to say STOP out loud to quiet the bitch down, then that's what I do...again that egocentric place I have to be in in order to survive.
One of the first things doctors and nurses tell someone who is diagnosed with a terminal disease is NOT to look it up on the internet. I have been a model patient and followed these rules. The internet is a great source of information however with something like this, it will be information overload and you often see the worse case of scenarios. It is like listening to a prescription drug commercial where they run through the list of side effects everything from headaches, vomiting, constipation to turning green, growing an antler out of your ass, and randomly singing Brittany Spears songs throughout the day and night. Where I have faltered is the grand world of Facebook. In our Big Brother is watching world, Facebook magically knows just by the search of something innocent that you say....want to buy Birkenstocks or are looking for a metastatic virtual support group. Then I began getting "suggested groups I may like" and this is where the trouble began. I would look at these groups and start reading and absorbing and hearing about this persons death or this issue or how this protocol or that protocol stopped working. I began to watch videos and seeing things about the median statistical length of prognosis from onset. It went sliding down the ski hill at that point.
The one piece of information that stuck out for me is this "median statistic" for length of life....are you ready for this. Take a moment to stop reading and listen to me. My kids and family know this so I am not blowing up a state secret. John has talked to them about this impact and how it is just a statistic and I NEED Y'ALL TO REMEMBER THIS.....THIS IS ONLY A STATISTIC. I am not yelling by the way, this is my version of an Italian waving their hands around. If it wasn't for my fingers flying over the keys my hands would be waving in the air. OK....here it is....the statistic is 3 years. That was the frying pan that hit me in the face and just when I thought I had my shit together and was doing so damn well.
I fell down the sink hole and not even Lassie could help me. I was doing so good, working on my NOT BUCKET LIST and trying to enjoy the mindful moments of each day and then I saw this. So what did I do....I had to talk to Dr. K. Luckily I had an appointment to draw my labs, check on my chemotherapy side effects and schedule my first 3 month scan....which by the way is July 24th. YIKES.....there is that frying pan just smacking me over and over again like a cartoon. If you look at me closely, you might even see the stars swirling around my head. Dr. K in his kind, pragmatic way confirmed that yes, that is the statistic BUT he said that in order to get an average statistic you have to have people who perform above and below average. Duh, I know that but somehow my brain cells are short circuiting and I am not thinking so clearly. He also said that with my reduction in pain and fever that he is hopeful this treatment is performing well and that I would be able to fall into the above average group. He said he believes I should live longer than the statistic.
I lived in the hole all last week. I kept seeing that number in my head and I became numb with fear. Rationally I know that my disease will progress, it will not simply stay in my bones, hanging out smoking a cigar and drinking a vodka tonic. Rationally I know there will be many different types of treatment in my future. Rationally I know all of this. Rationally I know that my expiration date is sooner than the norm. Irrationally I think I blocked all of this out. I mean, who wants to think of this shit...right?
I have begun to claw my way out of the hole, dirt dropping on my face, sweat, tears, LOTS of profanity. I am still climbing and think I always will be to some degree. I move an inch or two forward and may slip a little back. I have taken some things into my own hands, looking into other programs at Wellness House in Hinsdale, seeking a therapist to talk with, looking at my NOT BUCKET LIST and checking things off, praying more. But here is a sad reality. If this was a movie, everything would stop and I would travel the city and world knocking off everything I have ever wanted to do. I would be languishing time with my family and friends. I would do everything because I don't want to miss anything. I am a toddler in Chuckie Cheese, wide eyed and crazy wanting to do everything all at once. But my life is not a movie script and simply life, real life prevents some of this from happening. I still have laundry and chores, swim meets and water polo tournaments, bills and clients.
I know what you want to say....it can wait. But that is the thing, some of it cannot wait. Some is just life being life. For example, I want to see my son in his games and meets. I have to do laundry unless I plan on living my remaining years as a nudist and who the hell would want to see that (not to mention my family would have to become nudists as well). We would likely get thrown in jail as I don't think the police would buy my reasoning of "see officer, I am metastatic and I just want to live and enjoy everything I can before I expire so I gave up laundry"....yeah, I don't think that is a good idea. I have to do the business of life but find the balance of living everyday to it's fullest. That is the ultimate mind fuck!
So what now, you say. This is a start....getting it out of my head. Next, I try....that is all I can do. I do not know how people facing trauma do not hide under the covers and play invisible - that is what I want to do when I am in the hole. But I have to try....my strength is shaken....this is hard and very real right now. I pray my scan is good as Dr. K hopes. I pray that I don't expire too soon. I pray for strength and humility and hope and faith and healing peace. I pray there will be a breakthrough in this metastatic breast cancer war.
I simply pray....
Peace ✌
Jo
It has been way too long and I am sorry for that. I don't know why there has been a lag in my writing, some of it is simply life moving way too fast and some of it is a little bit of a reality bite in the ass. Nonetheless, here I am ready to pour it out, dust my self off, and allow the prayer warriors, energy givers, and faith believers to do their magic for me. I know, I know, that is egocentric, slightly narcissistic, and selfish but please believe me when I say, I think of all of you, pray for your kindness and pay it forward in every way possible. Hand to Bible, I do!
Life has been moving at the speed of light. I woke up and it is July, half the summer is over, there were Christmas ornaments and decorations in the store I was in last week. What the hell man, the witches and goblins haven't even graced my doorstep and you are dancing Santa Claus in my face. Slow the fuck down world....I guarantee the powers that be who run the stores, merchandising, and marketing are not staring down an expiration date as people like me face daily. They are not thinking of living mindfully, embracing the moment, and singing Kunbaya in the rain. It is just another mind fuck for me....slow down but oh wait let's plan our Christmas table decorations before we even carve a pumpkin.
So what's the skinny in my world these days. I woke up last week and was smacked in the head with a cast iron frying pan. If you recall, and its totally cool if you don't but I never shared the actual number Dr. K gave me back when I was given my treatment protocol. There were a couple of reasons for that. One, I didn't want my kids to dwell on it and two, I wasn't ready to think of the progression of metastatic disease. I wasn't living in a bubble, I just think my brain was still protecting me from a kick in the ass of reality. I mean, I knew what metastatic meant but again the mind fuck was that once I started my chemotherapy pill, I was feeling better not 100% great but definitely better than the bone pain, fever and lack of appetite I was experiencing prior to my diagnosis. For the past 2 months and through the first 2 round of chemo, I was working hard at staying in the now, being mindful, doing healthy activities, finding the egocentric place a cancer patient has to live in at times in order to survive the healthiest possible life they can.
We all know that during those 2 rounds, I battled head to head with the cancer bitch and often feel I was the victor in many of those rounds. I may have periods of being low but I always told the cancer bitch to stop, sometimes out loud, talking to myself in the car, on a walk, or standing in the middle of the store. So if you are hearing gossip around town about a short, red headed lady babbling to herself...it's me...I am the crazy one talking to the imaginary ghost standing next to me. I don't think twice when people look at me funny or take a step back, if I have to say STOP out loud to quiet the bitch down, then that's what I do...again that egocentric place I have to be in in order to survive.
One of the first things doctors and nurses tell someone who is diagnosed with a terminal disease is NOT to look it up on the internet. I have been a model patient and followed these rules. The internet is a great source of information however with something like this, it will be information overload and you often see the worse case of scenarios. It is like listening to a prescription drug commercial where they run through the list of side effects everything from headaches, vomiting, constipation to turning green, growing an antler out of your ass, and randomly singing Brittany Spears songs throughout the day and night. Where I have faltered is the grand world of Facebook. In our Big Brother is watching world, Facebook magically knows just by the search of something innocent that you say....want to buy Birkenstocks or are looking for a metastatic virtual support group. Then I began getting "suggested groups I may like" and this is where the trouble began. I would look at these groups and start reading and absorbing and hearing about this persons death or this issue or how this protocol or that protocol stopped working. I began to watch videos and seeing things about the median statistical length of prognosis from onset. It went sliding down the ski hill at that point.
The one piece of information that stuck out for me is this "median statistic" for length of life....are you ready for this. Take a moment to stop reading and listen to me. My kids and family know this so I am not blowing up a state secret. John has talked to them about this impact and how it is just a statistic and I NEED Y'ALL TO REMEMBER THIS.....THIS IS ONLY A STATISTIC. I am not yelling by the way, this is my version of an Italian waving their hands around. If it wasn't for my fingers flying over the keys my hands would be waving in the air. OK....here it is....the statistic is 3 years. That was the frying pan that hit me in the face and just when I thought I had my shit together and was doing so damn well.
I fell down the sink hole and not even Lassie could help me. I was doing so good, working on my NOT BUCKET LIST and trying to enjoy the mindful moments of each day and then I saw this. So what did I do....I had to talk to Dr. K. Luckily I had an appointment to draw my labs, check on my chemotherapy side effects and schedule my first 3 month scan....which by the way is July 24th. YIKES.....there is that frying pan just smacking me over and over again like a cartoon. If you look at me closely, you might even see the stars swirling around my head. Dr. K in his kind, pragmatic way confirmed that yes, that is the statistic BUT he said that in order to get an average statistic you have to have people who perform above and below average. Duh, I know that but somehow my brain cells are short circuiting and I am not thinking so clearly. He also said that with my reduction in pain and fever that he is hopeful this treatment is performing well and that I would be able to fall into the above average group. He said he believes I should live longer than the statistic.
I lived in the hole all last week. I kept seeing that number in my head and I became numb with fear. Rationally I know that my disease will progress, it will not simply stay in my bones, hanging out smoking a cigar and drinking a vodka tonic. Rationally I know there will be many different types of treatment in my future. Rationally I know all of this. Rationally I know that my expiration date is sooner than the norm. Irrationally I think I blocked all of this out. I mean, who wants to think of this shit...right?
I have begun to claw my way out of the hole, dirt dropping on my face, sweat, tears, LOTS of profanity. I am still climbing and think I always will be to some degree. I move an inch or two forward and may slip a little back. I have taken some things into my own hands, looking into other programs at Wellness House in Hinsdale, seeking a therapist to talk with, looking at my NOT BUCKET LIST and checking things off, praying more. But here is a sad reality. If this was a movie, everything would stop and I would travel the city and world knocking off everything I have ever wanted to do. I would be languishing time with my family and friends. I would do everything because I don't want to miss anything. I am a toddler in Chuckie Cheese, wide eyed and crazy wanting to do everything all at once. But my life is not a movie script and simply life, real life prevents some of this from happening. I still have laundry and chores, swim meets and water polo tournaments, bills and clients.
I know what you want to say....it can wait. But that is the thing, some of it cannot wait. Some is just life being life. For example, I want to see my son in his games and meets. I have to do laundry unless I plan on living my remaining years as a nudist and who the hell would want to see that (not to mention my family would have to become nudists as well). We would likely get thrown in jail as I don't think the police would buy my reasoning of "see officer, I am metastatic and I just want to live and enjoy everything I can before I expire so I gave up laundry"....yeah, I don't think that is a good idea. I have to do the business of life but find the balance of living everyday to it's fullest. That is the ultimate mind fuck!
So what now, you say. This is a start....getting it out of my head. Next, I try....that is all I can do. I do not know how people facing trauma do not hide under the covers and play invisible - that is what I want to do when I am in the hole. But I have to try....my strength is shaken....this is hard and very real right now. I pray my scan is good as Dr. K hopes. I pray that I don't expire too soon. I pray for strength and humility and hope and faith and healing peace. I pray there will be a breakthrough in this metastatic breast cancer war.
I simply pray....
Peace ✌
Jo
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