Cancer Update

 It is hard to believe I am back at this bullshit. Here's the thing...it never went away. For 8 Years and I don't know 8 months it's been lurking in me I guess. Waiting to disrupt what would have been my 9 years of no evidence of disease. I am reminded that I never used the word cure because you really never know. I just moved so far past the Cancer years, it rarely entered my mind. I didn't live afraid of it coming back. Now I fear having to live a life where it may never go away....though living with it would be a better option given the alternative. 

The positive is that I have my choice in clinical trials. Make no mistake...they are trying all the time to find a cure, & they've come so far in 8 years. Traditional chemo doesn't work well for this type of cancer. The two trials are frankly quite scary whether you are a gambler or not...and I have always gone brave and bold in this shit ass journey. I think for once after giving it much thought, letting it marinate, and a lot of talking it out...that is not the best choice. Going big and trying to get past this as fast as I possibly can may not give the best outcome as the percent of things that can go very wrong is much higher. When you think about looking for longevity, commitment is the better option. Living with metastatic disease while treating it & being thoughtful & thorough & ready to pivot if necessary is the better plan. If I'm lucky maybe it will work.

And so, the trial I will start is rather ironic or maybe not....it is the marathon...treatment for one whole year (pending something doesn't go wrong that forces me to have to stop). A lot of things could go wrong...but a lot of things could go right. 

People get very hung up on numbers and stages and survival rates. The only thing that is clear to me is that I have beat odds once before, so I don't need to know any of those numbers this time around. It was 8 years ago when I ran Boston as a qualified runner. Everyone told me the odds were low that a first time marathoner COULD qualify for Boston. But, I am not everyone, & I did succeed. I also was a coin flip in survival odds the 1st time I was diagnosed with cancer...one week after I ran Boston. 

So maybe my 1st bout with cancer was in preparation to really run the race...run that cancer marathon. If that's the case, here we go again. But for the record, I'm not brave nor bold. I am angry. I am scared. I still am having moments where I start to laugh uncontrollably & then I tear up because this is so ridiculous that I am dealing with this again but at a whole other level. This reoccurrence is crafty & not cut and dry. So yes....today I am not feeling brave or bold, I just am here..sitting in all this on a Monday doing work for my shop while having virtual "chemo" info sessions & scheduling all the other things that need to happen prior to treatment. 

I'll say it again....I am not brave nor am I bold...but I will fake it until I make it. Anyone can sit around in their house and "not live" because they are afraid to break. I refuse to live that way. I can't cope with this diagnosis living that way. And so I will play the role of brave & bold, and I will continue with my life's plans in between the inconvenience of this disease. 

The sun is literally coming out right now as I type this...so I must go run a few miles before I go back to my regular Monday of being a mom, being a business owner and fighting the good fight. Hey cancer not this girl...

Is there luck in a cancer diagnosis...

 Today was our 1 year anniversary of opening our Aroma Joe's coffee shop. I was literally thinking about what I was going to post to commemorate the date in social media. I love looking at the memories of the ups and downs and fears & fights conquered. I headed home & saw the email of the labs notification and then, my phone rang....cardinal's law for me anyway, important news always comes when I am at work or driving on 95N. I don't know why but I've lived this historically for the past 20+ years. 

"I'm sorry to have to tell you this"....and we know the rest. I haven't quite figured out if I am really God damn lucky or really unlucky. You see, a longtime friend of ours is battling the battle...and I think of him every single day because it's the same cancer I had almost 9 years ago. And then, I met someone at Rotary who's son had passed in his 20's & Dad fundraises for the cause...same cancer. This felt all too familiar a sign for me. 

I do believe in signs and being aware of the universe trying to point you in a direction. Back to last week...so, I called and in less than 24 hours, I was having biopsies done at my insistence. Fast forward 4 days later...I've been referred back to the place where I started. Luckily or unluckily, when you've been a VIP Cancer patient...they make things happen. Less than 24 hours I head back into Yawkey Way...if you know, then you know. 

I'm f*&*ing pissed because this should have been the Summer of 9 years cancer free. I'm so mad I think I could really knock someone out because this was not the chapter that was suppose to happen.

Back to Friday going in for the biopsies, they thought I was crazy. "What doctor is referring you for these biopsies"...."I am, I am referring myself. I've already had Stage 3 cancer so this is what we need to do." So they obliged, given my history even though they didn't think anything was unusual. Damn I wish I was wrong.

So am I lucky or am I unlucky? I've lived 8 years cancer free & was so close to 9...my lucky number. I guess time will tell. For now, I'm mad...mad as hell. Tomorrow I will run...then go work the business...and then, head into the oncology department once again. 

I have a lot of tears and a whole lot of anger in me...but I'm lucky. I am self aware and pay attention to things around me. I really feel like I could have easily ignored all the signs in the universe & who knows? Instead, I responded to a gutteral feeling...and while unlucky, my gut was correct...at least maybe Im lucky enough to have a good shot to fight again...

My Why: opening Aromas...

 Fun fact...no, I never dreamed of owning a coffee shop...like ever. The things I am passionate about are fitness, my family & a love for caffeine so that I can survive my athletic endeavors and family, ha. But seriously, I never once thought I would be opening a coffee shop...not in a million years. I have always been a fairly content person. I like simple things...not bougie at all as my kids might say. I've literally never given a shit about the "Jones" or keeping up with them. If I won the lotto tomorrow, I still would have zero interest in belonging to all the "clubs" in my fancy Seacoast town. I don't care or judge if friends of mine do...I myself am just more comfortable in the places where the people go...all the walks of life. I would rather sit on a beach in the sand than go out to the country club in a dress....hang at the local bar with all the locals than go to the latest and greatest....

So why take a huge risk like opening a franchise like this? 

Fun fact....I can come across as all business and kind of quiet to those who don't know me well. Once I know you are one of my people...you realize I am one big giant "teddy bear" so to speak, full of inappropriate talk, say what I mean and mean what I say...and if you're one of my people, you know you are because I will do almost anything for my people if they need my help. A blessing & a curse...

My history dictates I will take risks and do things if I am so passionately fighting for someone or something that I believe in. Remember that fight for sports in town? 

Thank God I connected with two other amazing, strong & inspiring mothers who felt the same way as me. We took risks because we knew our kids needed us. I can't speak for them but for myself...I pretty much was vilified by a small group or maybe a person (s) or two for speaking up. I don't apologize for fighting for a group (high school athletes) who wanted to play sports with all the other towns who were. My passions & fight didn't come with dreams of success and superficial purposes(same with those 2 amazing humans)...but I digress here and that topic is for another day...

Point being, I feel my strongest, my best and like I'm fulfilling what I am suppose to do in this life when I am doing good for our kids...all our kids. 

Most of you know, I have a daughter with an autoimmune disease that has no cure. It affects every minute of every day. I wouldn't wish it upon my worst enemy. So what is a Mama Bear to do??? I am not a doctor, research scientist...I literally have nothing to offer to help other than give my measly donation that wouldn't touch our yearly medical expenses let alone help find a cure.

I worry that "they" will never find a cure because frankly her disease is big business in the pharma world. People will lose jobs and companies will close if and when they find a cure. I also worry while we wait for that cure...how will she be able to afford all the expenses once she is off our health insurance. It drives a need to make money...money for a cure, money for all the families who struggle affording the medical costs of this disease, money she might need if they don't find a cure by the time she is off our insurance...

Fun fact...we looked at a lot of franchises....and while Jamey and I both come with a background in fitness...that didn't make any sense even before Covid. By coincidence or fate, Jamey came across an Aroma Joes before they were franchises up near our rental properties in Rochester (the very 1st Aroma Joe's where 4 cousins created a menu, a business, and hope).

So here we are opening a coffee shop/drive through...who's motto is Positively Impacting People. This  "new" franchise is all over NH and Maine and now, here Jamey & I are opening the very 1st Aroma Joe's in the North Shore right down the street where I grew up. Literally...3 miles from my childhood neighborhood. 

It has had it's challenges and there are many days I feel like giving up, like there's no hope. But I remember my why....and I know if I am going to attempt a hit...I have to step into the batter's box and give it a swing. 

Fun fact, I never felt compelled to open a coffee shop/drive through or franchise. But I have always felt compelled to want to help my people in anyway I could....

Maybe, just maybe we knock it out of the park....

"Clear eyes, full heart...can't lose"....

Off to college: A love letter to my first born

I spent my whole life waiting for you. You were the one who made me a mother...the one I imagined when I thought about being a grown up with a family..."playing house." I loved you before I even knew you were a possibility...and then, when I heard your heart beat for the very 1st time...that rhythmic sound of a life...of you...I loved you even more. 

There is nothing that prepares us for being a mother. We have preconceived experiences and notions of it...maybe influenced by our own up bringing or the one we dream of. But, we don't REALLY know until we experience it first hand. 

It makes our heart grow ten fold while breaking it just a little because we know we cannot protect you from everything. And we know some day sooner than we would like that "umbilical cord" will be cut figuratively several times in your life time as our child...18 years to date....perhaps it never ends...

I am going to be okay. But right now, if I'm being truthful...I am not okay. The one thing I can compare this experience to is giving birth to you and then, having to go back to work when you were just 5 months. I worried that no one would know how to take care of you...that you need "Bear" to sleep...that you are an incredible sleeper once down, but if you wake up and "don't sleep through the night" you are probably sick, this is the truth, easiest baby there ever was. You always woke up with a huge smile on on your face...but would they care for you when you weren't well as well as me?

I worry now will someone else know you have one of the kindest hearts around and not to break it? Will they know you are really that girl who is too good to be true? Will they know you are pretty darn smart and that you are a fighter and you persevere? There literally is nothing you cannot accomplish. Will they love and protect you the way I have?

I am going to be okay. But right now, I am going to be checking in...trying hard not to over do it...giving you your space to spread your wings...just the way I have raised you to do, take a chance & spread your wings. But, I am also here if YOU need me a little more than usual on some days...or for no reason at all once the excitement has worn off.  I will always be here because I have raised you to know you can count on me whenever you need me. 

It hasn't even been 12 hours since we left our home to drop you and your father off at the airport. By the way, of course you fall in love with the college that is as far away as could be....because I raised you to go big and go after your dreams...even if they are a little or a lot scary.  Once you set your sights on something that you really care about and believe in...you make it happen...literally right before our eyes. 

I'm going to be okay. But promise me, you will occasionally ask yourself WWMMD? What would my mother do (or say)? I don't have all the answers that is for sure...but for those moments when something doesn't feel right or certain.. ask yourself that....

When you were a newborn and up through until you wouldn't let me rock you to sleep...I would sing to you "You are my sunshine, my only sunshine...you make me happy when skies are gray...you'll never know dear, how much I love you...please don't take my sunshine away."

I am going to be okay because I know you are shining your sunshine on the whole world now, paving your own way and filling your own heart and dreams while spreading that beautiful smile and heart to all who know you and those just meet you by chance...

I am going to be okay because I have been given the gift of being your mother. 

 

Fat girl stuck in a thin girl's body

 Looking back, I think one of those pinnacle rock bottom moments (usually we have a few) was when I figured out how to open up the drain in the dorm shower so that I could purge the little food I had eaten while under the guise to my roommates that I was just taking a long shower. It still haunts me over 25 years later as I was so ashamed for being so desperate. I didn't want to live this way but I didn't know how to live without tormenting my body through starvation, binging and purging, and over exercising. 

We are all capable of such obsessive compulsive behaviors and addiction. Some of us more than others. There are so many different vices but ultimately the desire for control and the lack there of control is a daily battle. For me between 19-22 years old, it was restricting food, starving, purging and exercising all the time (despite being a college athlete who already spent many hours in the gym).

To say it was my sport that caused it is the farthest thing from the truth. For me, it was a myriad of things that ended up snowballing. Yes, I definitely had a distorted body image. It did not help that at the time, there were not a lot of images for young female athletes to look up to. I worshipped Gabrielle Reece but even she was not someone I could identify with as she was 6'2 and quite thin herself.  I also was in a relationship with an alcoholic so needless to say two sick people make for a disaster and further propelled me into my quest to find control. Throw in a cancer diagnosis of my mom, and you basically have the perfect recipe for illness. 

My quest for control came in the form of creating what I felt was the perfect body. I remember thinking if I was just a little bit thinner with my muscles a little more defined, I would be fine with it. The problem was what I saw in the mirror and reality were worlds apart. I would never be able to see the truth and would always be chasing this image I created. The quest for "perfection" would never end causing an endless cycle putting my health in risk and tormenting me emotionally. 

Fast forward to that pinnacle moment we usually have when we look around and finally feel like we had made it. For me, it was when I was pregnant with my first child, and I actually became more comfortable with myself than I probably had been in my entire life. For the first time, I actually felt beautiful, strong, and with a purpose that was worthy. I vowed to myself that I would be the example of strength and health so that none of my future children would ever go through the pain of what I went through. 

Not your average dreamer.....

 You may call me a dreamer...but I am not the only one...

Difference is I don't rely on anyone but my own hard work, dedication, sweat, tears & blood...I am not waiting to be saved. I have and will always continue to save myself through my hard work, not giving up when others do, and going harder when it seems like all is lost. Sometimes I lose my way...but I never lose my vision or who I am....

I took some time off from my contract as a "Cure" writer because frankly, I am kind of done writing about Cancer...for now & maybe forever...it was a great paying gig let's face it but where I am today....I am looking far past the miles I was in....I am looking for the next marathon and the one after that...and I will stay stuck if I keep rehashing that "one bad race." I want to write about the next race, the next success...the next learning experience...the next whatever as long as it has nothing to do with the C word. 

Lately though, I've had a lot of painfully passionate projects & ideas ringing through my head...ringing so hard I needed to run many, many miles until I could just put them to rest...because right now, we are living in a world where we cannot voice ALL our truths without being vilified or called names for not going with the majority or the flow of the people we live amongst.  I've also been told maybe I shouldn't tell some of my stories...and maybe I shouldn't...and maybe I should play nice and maybe I should also go along with what the cool kids in my town do or say...but one thing I know...girls who play nice usually lose and people who just go along with the crowd because they are too scared to have their own opinions...well, they end up losers too. 

So in my usual routine on a snowy early morning when everyone is avoiding the roads, I took to them. It was a slippery run because it had snowed finally, and I had left my grippers up North but I ran anyway because that was everything that I needed in that moment. 

My beautiful picturesque town who has been showing many shades of ugly in the Winter because of all we are going through right now with Covid 19, kids being out of school since March 13th....and the rest of all the ugly you can easily find on any social media group platform....

I ran through our town this morning seeing newly Patriotic flags...not all hung correctly...but hey it's a start...and even if we don't agree with all things, I will never vilify you or demean you for having a difference of opinion.....or not hanging it correctly (stars first on the left, stripes to the right if you don't hang it from a pole)....

This beautiful Seacoast town this morning, finally covered in some snow....disguising all it's bruises and imperfections....hard to see all the "Closed for Hibernation" or "For Lease" when you are blanketed in a fresh coat of snow....like a beautiful girl who thinks she's ugly and needs to cover her blemishes with makeup & falsies....

I will keep dreaming....but my dreams come with action....girls like me don't wait for white horses and a prince to save her...we jump on and start riding the damn horse ourselves even if we don't know what we are doing, where we are going, or for that matter how we may get there....

Dreamers are not always poetic nor are they always politically correct. Dreamers lace that shit up and just start running and maybe while they are out there they will figure out where they are going and how far they are going to take it. 

Cheers to all the dreamers not afraid to speak up, go against the mold, and to double down when the shit gets tough. 

Why I don't Sleep Continued: 1st night away at camp

The rain pitter patters as I wait for the text alert to come through. Finally, someone responds and the nurse will go in to check on my girl because wifi up there "is spotty."  We rely so heavily on technology. It helps us be proactive and keep her alive in the middle of the night when the shit hits the fan.

Right now, I am unable to receive any alarms or data that follows her so I am completely at will and trust to complete strangers who care for her up at camp. I hold my phone like a ticking time bomb tonight. Normally, it is my relief because I can quickly glance at a number and see a trend. It is my lifeline to keeping her alive and well. Not tonight for the past hour and a half. So I wait until the next scheduled check at 3am and pray that God will keep her at safe numbers. I know I won't be sleeping tonight. and as much as I deserve a fucking break, I know I won't get it. She deserves to be at camp with the rest of her class. Three whole nights away....

What people don't understand is that the human body is truly a miraculous thing. They don't understand this until they find they are with a disease or illness that will never go away. My daughter's pancreas decided to bite the dust because of some unlucky cards dealt. And because she is dependent on synthetic insulin to be injected into her body to keep her alive...well, the body becomes not so miraculous with an imposter. It becomes out of synch, no longer the fine tuned machine functioning on it's own.

Night times with this disease are the worst. Sometimes her body reacts to the insulin perfectly and everything is in check and she sleeps through the night. Most times lately, alarms are going off in the middle of the night because maybe her own growth hormones are interfering and she is going dangerously high. The slow death...the kind of numbers that can cause retinopathy, neuropathy, and a slew of other deadly complications later in life that I cannot even say out loud. These are the things I think of when those numbers go too high.

Some nights, the insulin dose is too much, or her body is churning full speed ahead and she comes tumbling down....down, down....reminding us how fragile life is and how important it is to hear those alarms and react. Dead in bed...it's a thing....so help me God, I will not let this happen to my girl.

And so I sit here in the dark downstairs mindlessly typing on this laptop knowing tonight will be another notch in my sleepless nights....all because of shitty wifi at a camp.

She has never even been to a sleepover (not that I am a fan for regular mom reasons) but literally...what parent would volunteer to be her pancreas for the night? She rarely even has an overnight with family. It is not for the faint at heart. You have to be on your game, ready to respond even if it's multiple times during the night. I wouldn't volunteer if it wasn't my kid. 

But she deserves to have what other kids have, some normalcy: three nights away at camp with her class. And I will sit here until that 3am check comes through, and after, maybe I'll get a few hours of sleep before I am texting everyone up there on going through the technological roll call & getting things back online.

I miss my sleep, and I don't know if I will ever get it back....at least until they find a cure. I know it's out there, and at these hours in particular when I don't sleep, I wish all the people in the world would want a cure for this disease as badly as I do. She deserves to be at camp, and I deserve to sleep.