Sarcoma

Did you know I had cancer ? #worldCancerDay

6 months after the Mayo Clinic sent me home to die ( quite literally )
When the miracle of prednisone came , I could eat again .
And I finally felt like I was getting my life back .
I was diagnosed with cancer .
And not just any cancer
Ironically the girl who WAS dying from an unknown rare disease ( later to be diagnosed co-morbidities like gastroparesis from UCTD and CVID. )

I’m tempted to make a vlog sharing my whole crazy cancer story,
How I canceled the surgery I was suppose to have to remove the remaining tissues , the day before surgery . and drove up to the cancer center with nothing but a sticky note in hand. Only to end up getting a doctor at the cancer center who was one of 5 in the US trained to treat this cancer.
Then learning you have amazing odds if DFSP treated right . But treated wrong it becomes crazy aggressive .
Adding to the horror and the miracle that it was inches away from being in my lungs before we caught it .

But This #worldCancerDay

Also being in #raredisease month .

I scroll through photos at the time of my diagnosis and beyond .

And I can’t help but feel gratitude for all the life I have lived since then

I’ve had kind of a bummer day emotionally because I haven’t been feeling good , and I just REALLY want to go see my aligator in the art show .

But As I’ve scrolled through 5 years of photos .
I feel the absolute privilege it is .. just to be alive ❤️❤️.

Cancer taught me to take advantage of every new experience.

Because today , and the ability to live through it . Is a gift ❤️

#smileon🐷 #dfsp #sarcomasurvivor #spoonie #cancersucks #chronicillness #hope #nec #unicorncancer #itgetsbetter

My 4 year #cancerversary was on the 10th . ( yep that is a pic of my cancer )

And when I woke up and remembered ,

I felt this feeling of dread .

Maybe I was just having an “off day”. But I didn’t take that day like I usually do .

I didn’t eat extra cake , do something fun , celebrate being alive , take cute pictures, and write something deep and meaningful about existence .

I tried to take it out of my head that it was my cancerversary.

Avoided my phone .

Did chores .
Watched TV
Played with my nieces
And tried to treat it like it was a normal boring day .

Because I didn’t want that reminder that mortality is fleeting .

I didn’t want to reflect on the fact That 6 months before my diagnosis I told “ enjoy what life and quality of life you have left “
Because of my rare auto immune disease.

And then when I found a miracle treatment and FINALLY thought my health was under control .

I was blown over by the words
“You have cancer “

3 words that forever changed .. everything.

With my health lately feeling like a grenade being held by someone who is just itching to pull the pin and watch the whole thing explode
While I beg them not to do so .

I didn’t want to remember how life can change on a dime .

I’m grateful to be alive ,
I’m grateful to currently have “ no evidence of disease “

But on that day .
Not acknowledging my “cancerversary “

Not making a big deal out of it.

Was how I coped.

Anniversaries can be a big deal
( in a good and a bad way )

Life can just be .. overwhelming sometimes.

I challenge you today to take 30 minutes for self care .

Whither it be eating your favorite food , going on a drive , taking a bath, buying something for yourself, reading a book , painting your nails , taking a nap.

Do something to make sure your ok . 👌🏻 because you deserve the same love and care you so freely give others ,

#smileon🐷 #spoonie #cancersurvior #sarcomasucks #dfsp #unicorncancer #chronicillness #raredisease #thecancerpatient #cope #selfcareisntselfish #Sarcoma #MightyTogether

Hey Mighty Fam! #MightyTogether

Long time no type! So as the worlds been ending. My body has been falling apart ( what’s new lol! 😅). Between managing my #UndifferentiatedConnectiveTissueDisease ( UCTD ) , my #CVID , and getting use to life on #IVIG . ( holy cow us sick folks use a lot of acronyms! 😂). A tumor that has been causing pain in my upper thigh for about a year. Decided to become utterly exrusiating. And having a history of #Sarcoma ( DFSP). You can imagine the emotional rollercoaster this sucker has taken me on. My sarcoma doc refused to remove it because it “shouldn’t hurt “ . But after getting horribly misdiagnosed from my “second opinon surgeon” and being sent up to him. He FINALLY agreed to do the dang surgery ! So I’m getting this bad boy cut out on Wednesday. But my body is prone to complications.. and because of #COVID19 my #Caretaker has to stay in the car in the cancer center parking lot. And I will .. for the first time EVER be “ flying solo” for surgery 😳. ( gulp!). So life has been crazy but you .. my mighty family are always on my mind! I hope to share another article.. and more thoughts with you soon! ❤️❤️