Steroid Support Group

This is my new support group to talk about my new drug that drives me bonkers! I am sick of apologizing for acting like a crazy lunatic...but really people.....try a pill!!!! 


Group in Session


Michelle The President (for now)


Drug Dexamethasone - Steroid


Dexamethasone, a corticosteroid, is similar to a natural hormone produced by your adrenal glands. It often is used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Dexamethasone is also used to treat certain types of cancer.

• upset stomach,stomach irritation, vomiting, headache, dizziness, insomnia, restlessness, depression,anxiety, acne, easy bruising, irregular or absent menstrual periods,skin rash, swollen face, lower legs, or ankles, vision problems, cold or infection that lasts a long time , muscle weakness
  I shall add snappyness and bitch like remarks to all!
  If anyone would like to join. There is no fee and complaints are welcome. 

GoodBye Today, See You Tomorrow

What a medication adventure.  I have never felt this way before in my cancer career.


It has been a very difficult time for me. With all my left over energy I  just try to keep a semi normal day going, its tiresome. I can't keep my eyes open.
I really am so happy that the steroids have controlled the horrid brain swelling, vision problems, vertigo and most of alll the killer knife machete head pains.  


My poor body is braking down so fast and I feel that everything that I add to it is not strong enough to balance me out internally.  I'm juicing, eating veggies, salads and eating good healthy meals for a healthy immune system.


The past month has been pretty much the same.  Wakie Wakie between 4-7 am  Hyper all day, followed by a couch lunch time nap.  Again... 6mg steroid in Pm.  Antibiotic because my immune system is broken down and I can get pneumonia very easily.  I started a  Caeser -Migraine pill every day to help with the headaches and nerve/eye issues. Add sleeping pills to the sheep and lambs that do cart wheels in the other half of my brain. Of course a normal  33 year girl would go nuts  with out her nightly prune juice, miralax drink :) 


I basically feel like I am constantly dipped in and out of a pot of Starbucks coffee! My heart is constantly racing and my intention span is.....ugh I don't have one. My jaw hurts from talking too much! I am sick of apologizing for my rude outbursts...or what the doctor told me last year, the radiation desttoryed my "Filter" 


My Neurologist did drop me down to a lesser dose of steroid over a week ago. I made a phone call today and explained that  I don't think I can keep doing this for a month till my next appointment. The happiest nurse called me back is letting me taper down the steroid and see how my head feels. I am very nervous. I was in so much pain and can't even imagine getting to that point again. Any twitch and I popping them like pezz candy!  I also learned from the lovey nurse that the hospital gave me the worst instructions! Don't take the steroids at night! Really! Breakfast and Lunch. 


Urgent Care is my #1 Speed Dial


Radialoist News from Todays Appt


The scan looked great. The nerve looks nice and the Radiation seemed to have worked :) It's still a work in progress. I have some tightness in the area, normal. I will see her in two months. Have a few more scans and hopefully  we will see full positive improvement as time goes by.  It needs to shrink back to normal and let's pray it didn't spread anywhere else. POSITIVE!


I am concerned about my Brain and the Necrosis. I am scared that the swelling is going to be something that I have to deal with forever. Which means head  & nerve pains and daily medicince. I just don't want to be a paitent. I don't want to be on medicine. I don't want to have cancer anymore.


The Pill Box!


Knowing I have been able to handle my body with natural beautiful earthy ways, it's killing me to live with a SMTWTFS Blue plastic box filled with pills! 


That's my Medical Journal! Other good news...Paul and I are looking forward to getting back into our new renovated home! It's been a very long, stressful summer. Tile, Furniture, lighting...all the fun stuff is keeping me busy. A little dizzy too!  I am very excited! I want Paul to have some happiness and not worry about me so much. Easy to say...but he always worries...because he loves me so much. Awe. 


SPOHNC FOR A CURE !!!!!!!!!!!!!


Please join us!!!!   TEAM SPOHNC   I will be signing up and would love for my friends, family and love Angels to donate to an amzing cause!!!! 


Please go to the website cycleforsurvival.org and look for Team Spohnc for more information on how to participate and how to give donations.
I will be sending out emails and updates in the next week or two. I would really apprecaite the support and my fellow fighters would too! Every DIme helps. I don't think people really understand the impact that Cancer of the head, oral, mouth and  neck   have on patients and our loved ones!  It's not only visual and  emotional...but we get silly issues that are damaging. Support for a cure..HELPS!  Thank you for listening to me. 




I love all of you to pieces. I have such tough days, but know my life is a blessing and I am grateful. I cry because I am sad, and for the good things too. I picked some beautiful September flowers that were wilting and thought....hey...they still need to be in my home being adored. I am wilting, but I will stay precious to myself. Stick me in water and I will keep blooming, and make a room pretty. 


My Blood is still pumping gently along my pink heart and 
Every day  I awake is a box wrapped with blue ribbon filled with love....and 
hopefully a pair of new shoes : 


Goodbye today, See you Tomorrow
I love my husband 

Radiation End Picture!

                                        "You only live once, but if you do it right, once is enough"

Poem

Thank you Jessica for this poem. We all have our ups and downs and it's nice to read beautiful words and get back to the reality of life.   Fartman....my friend....again your energy and thoughts make sense and help me get through things. I apprecaite it.
Wishing everyone a peaceful lovely day. Big Hugs.


The Awakening
Sonny Carroll

There comes a time in your life when you finally get it ... When in
the midst of all your fears and insanity you stop dead in your tracks
and somewhere the voice inside your head cries out "ENOUGH! Enough
fighting and crying or struggling to hold on." And, like a child
quieting down after a blind tantrum, your sobs begin to subside, you
shudder once or twice, you blink back your tears and through a mantle
of wet lashes you begin to look at the world from a new perspective.

..........This is your awakening.

You realize that it is time to stop hoping and waiting for something
or someone to change, or for happiness safety and security to come
galloping over the next horizon. You come to terms with the fact that
there aren't always fairytale endings (or beginnings for that matter)
and that any guarantee of "happily ever after" must begin with you.
Then a sense of serenity is born of acceptance.

So you begin making your way through the "reality of today" rather
than holding out for the "promise of tomorrow." You realize that much
of who you are and the way you navigate through life is, in great
part, a result of all the social conditioning you've received over the
course of a lifetime. And you begin to sift through all the nonsense
you were taught about :

 - how you should look and how much you should weigh,

- what you should wear and where you should shop,

- where you should live or what type of car you should drive,

- who you should sleep with and how you should behave,

- who you should marry and why you should stay,

- the importance of bearing children or what you owe your family,

Slowly you begin to open up to new worlds and different points of
view. And you begin re-assessing and re-defining who you are and what
you really believe in. And you begin to discard the doctrines you have
outgrown, or should never have practiced to begin with.

You accept the fact that you are not perfect ,and that not everyone
will love appreciate or approve of who or what you are... and that's
OK... they are entitled to their own views and opinions. And, you come
to terms with the fact that you will never be a size 5 or a "perfect
10".... Or a perfect human being for that matter... and you stop
trying to compete with the image inside your head or agonizing over
how you compare. And, you take a long look at yourself in the mirror
and you make a promise to give yourself the same unconditional love
and support you give so freely to others. Then a sense of confidence
is born of self-approval.

And, you stop maneuvering through life merely as a "consumer" hungry
for your next fix, a new dress, another pair of shoes or looks of
approval and admiration from family, friends or even strangers who
pass by. Then you discover that it is truly in "giving" that we
receive, and that the joy and abundance you seek grows out of the
giving. And you recognize the importance of "creating" and
"contributing" rather than "obtaining" and "accumulating."

And you give thanks for the simple things you've been blessed with,
things that millions of people upon the earth can only dream about - a
full refrigerator, clean running water, a soft warm bed, the freedom
of choice and the opportunity to pursue your own dreams.

And you begin to love and to care for yourself. You stop engaging in
self-destructive behaviors, including participating in dysfunctional
relationships. You begin eating a balanced diet, drinking more water
and exercising. And because you've learned that fatigue drains the
spirit and creates doubt and fear, you give yourself permission to
rest. And just as food is fuel for the body, laughter is fuel for the
spirit and so you make it a point to create time for play.

Then you learn about love and relationships - how to love, how much to
give in love, when to stop giving, and when to walk away. And you
allow only the hands of a lover who truly loves and respects you to
glorify you with his touch. You learn that people don't always say
what they mean or mean what they say, intentionally or
unintentionally, and that not everyone will always come through... and
interestingly enough, it's not always about you. So, you stop lashing
out and pointing fingers or looking to place blame for the things that
were done to you or weren't done for you. And you learn to keep your
Ego in check and to acknowledge and redirect the destructive emotions
it spawns - anger, jealousy and resentment.

You learn how to say "I was wrong" and to forgive people for their own
human frailties. You learn to build bridges instead of walls and about
the healing power of love as it is expressed through a kind word, a
warm smile or a friendly gesture. And, at the same time, you eliminate
any relationships that are hurtful or fail to uplift and edify you.
You stop working so hard at smoothing things over and setting your
needs aside. You learn that feelings of entitlement are perfectly OK
and that it is your right to want or expect certain things. And you
learn the importance of communicating your needs with confidence and
grace. You learn that the only cross to bear is the one you choose to
carry and that eventually martyrs are burned at the stake. Then you
learn to distinguish between guilt, and responsibility and the
importance of setting boundaries and learning to Say NO. You learn
that you don't know all the answers, it's not your job to save the
world and that sometimes you just need to Let Go.

Moreover, you learn to look at people as they really are and not as
you would want them to be, and you are careful not to project your
neediness or insecurities onto a relationship. You learn that you will
not be more beautiful, more intelligent, more lovable or important
because of the man on your arm or the child that bears your name. You
learn that just as people grow and change, so it is with love and
relationships, and that that not everyone can always love you the way
you would want them to. So you stop appraising your worth by the
measure of love you are given. And suddenly you realize that it's
wrong to demand that someone live their life or sacrifice their dreams
just to serve your needs, ease your insecurities, or meet "your"
standards and expectations. You learn that the only love worth giving
and receiving is the love that is given freely without conditions or
limitations. And you learn what it means to love. So you stop trying
to control people, situations and outcomes. You learn that "alone"
does not mean "lonely" and you begin to discover the joy of spending
time "with yourself" and "on yourself." Then you discover the greatest
and most fulfilling love you will ever know - Self Love. And so it
comes to pass that, through understanding, your heart heals; and now
all new things are possible.

Moving along, you begin to avoid Toxic people and conversations. And
you stop wasting time and energy rehashing your situation with family
and friends. You learn that talk doesn't change things and that
unrequited wishes can only serve to keep you trapped in the past. So
you stop lamenting over what could or should have been and you make a
decision to leave the past behind. Then you begin to invest your time
and energy to affect positive change. You take a personal inventory of
all your strengths and weaknesses and the areas you need to improve in
order to move ahead, you set your goals and map out a plan of action
to see things through.

You learn that life isn't always fair and you don't always get what
you think you deserve, and you stop personalizing every loss or
disappointment. You learn to accept that sometimes bad things happen
to good people and that these things are not an act of God... but
merely a random act of fate.

And you stop looking for guarantees, because you've learned that the
only thing you can really count on is the unexpected and that whatever
happens, you'll learn to deal with it. And you learn that the only
thing you must truly fear is the great robber baron of all time - FEAR
itself.  So you learn to step right into and through your fears,
because to give into fear is to give away the right to live life on
your terms. You learn that much of life truly is a self-fulfilling
prophesy and you learn to go after what you want and not to squander
your life living under a cloud of indecision or feelings of impending
doom.

Then, YOU LEARN ABOUT MONEY... the personal power and independence it
brings and the options it creates. And you recognize the necessity to
create your own personal wealth. Slowly, you begin to take
responsibility for yourself by yourself and you make yourself a
promise to never betray yourself and to never ever settle for less
than your heart's desire. And a sense of power is born of
self-reliance. And you live with honor and integrity because you know
that these principles are not the outdated ideals of a by-gone era but
the mortar that holds together the foundation upon which you must
build your life. And you make it a point to keep smiling, to keep
trusting and to stay open to every wonderful opportunity and exciting
possibility. Then you hang a wind chime outside your window to remind
yourself what beauty there is in Simplicity.

Finally, with courage in your heart and with God by your side you take
a stand, you FAKE a deep breath and you begin to design the life you
want to live as best as you can.

A word about the Power of Prayer: In some of my darkest, most painful
and frightening hours, I have prayed, not for the answers to my
prayers or for material things, but for my "God" to help me find the
strength, confidence and courage to persevere; to face each day and to
do what I must do.

Remember this:- You are an expression of the almighty. The spirit of
God resides within you and moves through you. Open your heart, speak
to that spirit and it will heal and empower you.

My "God" has never failed me.

Other things?

Rule

If I stay positive, I will have a better chance.

Let me use my cancer for something good and light a fire under my butt!
It's time for some researching.

Calling all SPOHNC -ERS !!!!!
Suggestions on any sarcoma studies in other countries, states? I have tried the p53 gene study. What else is out there for me to try.
Please, Help would be great.

Astonishing fart man.....where are you? You've been missed.

Wonderful night to all

Xoxo hugs Michelle

Awaken

I am living with the reality that my body may never be cancer free. I will slowly be tortured and maybe never cured. I may never feel complete and I have so many more things I want to do with my life. Which I will do, just not that fast.  I sit wondering about the real  meaning of my days ahead. I asked for love, I got it. Praying for peace & strength for all around me. I have been on my hands and knees  begging  god for a child.  A painful time for a young couple to go through. How much can be taken away? I beg for a normal life,  freed of cancer shackles that are weighing me down into the mud.  

I am having a hard time floating back up into Zombie world...that's your land of blue skies.

I am looking for my awakening. 

 My  Fall Cancer tumor update will begin in less that one month. A countdown to new dangerous lymph nodes that need to be ready to get their butts whooped.....by Me.

I am happy to be a young girl  ready to say, " I have Cancer, I am Cranky. And you can't handle it!"

I have had this conversation playing over and over.  A Cancer Card Cranky message  that I received from a friend months ago. Something I haven't been able to forget. It made me realize the lack of care a person can have. Best thing to ever hear from the person...the truth and how they feel about you having Cancer. HOW can one be jealous of Cancer? What happened to comapassion? 

 I will leave it alone  and move forward knowing that some things can not be mended.  Ugly words run deep into my soul. 

I don't want someone like you in my life....so I choose to be free. 

Oops

Paul just told me that I was wrong!

It was Chair, green & honesty!

My Brain isn't working that great....thank god his is!

Big Brain

I am home from the hospital...No Headaches! 


I knew something was terribly wrong on Saturday. I just waited because I wasn't sure if my pain was going to subside. It didn't. 
I had the worst head pains. I mean...I couldn't even talk it was that bad.  I thought I was going to die, really that's how horrible it was.  Monday night I woke up at midnight....crawled to the living room...holding my head and then I threw up. The last time I felt that way was after my Brain surgery. I knew something was wrong and I needed to see a Doctor. 


Paul drove me into Urgent Care at Mskcc.  I did testing and an MRI. Neurologist tested my Brain functions. Remember these three words.... Couch, green & honesty. Piece of cake! I passed my test, now give me drugs....please. 


The scan showed severe swelling in the area  that I had radiated years ago. This was my diagnosis.... worsening leftward subfalcine shift from 10-14 mm. Meaning....my brain moved! Really it moved which has been causing the headaches, eye problems...dizziness. My recent treatment didn't help. The nerves go right into this area and the radiation tricked in. My brain got bigger....my fantastic smart brain does not fit in my pretty scull. 
I have necrosis in this area, which hasn't changed. That's a very good thing. I got an IV and they pumped me with a bag of steroids.
I have swelling from Radiation. Even though my brain wasn't getting radiated, it can get some leftover that can cause problems. I was able to see my eye doctor today at the hospital. They were nervous about spinal/brain fluid in my eye. I was fine...but have cataracts. 


I will be on steroids and belly medicine for a while. I see my Neurologist and Brain Doctor (love him) soon and will get on a plan of attack. I still have to deal with the lymph node bumps  that I found in my neck. Cross your fingers that it's nothing. My track record.....It's most likely something. Good thoughts! No more surgery....I am taking it as it comes. 


Good news! The scan showed that my nerve that I just did 6 weeks of treatment on looks great. The tumor cancer cells may be gone! The radiation worked! I still have to wait for another scan in a few weeks...but, that was promising. 


I am back in bed. Being careful about my head. I can't even tell you how scary this is. My Brain is swollen and could be a problem.  I am just so happy that I don't have a headache. 


Brain love to all and to all a good night