My CyberKnife Experience

Just hearing cyberknife and knowing it was for a tumor behind my eye was beyond anything I could imagine.  Then I was told it would take 3-4 hours and I would be awake the entire time.  This was not an appointment I was looking forward to!

I have to tell you it sounds worse than it is.  It actually doesn’t even involve a knife.  It’s a robotic radiosurgery system that delivers beams of high dose radiation to tumors with extreme accuracy.  No cutting and no pain involved.  I was fitted for a mask the week before surgery.  For me, this was the only uncomfortable thing about the surgery.  The mask is screwed into the table and it’s tight.  Here’s a picture of my mask.  I see a Halloween costume in T.J.’s future, it’s scary!

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They gave me an Ativan before the surgery.  I was worried about being awake during this.  If they had said we give you ativan before we start I would have had no worries.  I remember my mask being attached and getting up.  That’s it.  I won’t have a new brain MRI until the end of October.  I’ll update you when I get results.  Waiting is always the hardest.  I just try not to think about it and go on with life.

This is a picture of the Cyberknife System.  The robotic arm moves to hit targeted areas.

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Now for the aftermath.  I vomited for 2 weeks and lost 15 lbs.  I couldn’t eat.  Everything I tried to eat tasted so salty and I would get sick to my stomach instantly.  The medical term for this is Dysgeusia.  I ate chicken nuggets for two weeks.  Now I’m eating fish, rice, cantaloupe, chicken nuggets, cheese on unsalted crackers and cheesecake.  My Javiee is still making me juices and I’m keeping them down.  I do miss his cooking!  Chocolate and red meat are the worst right now.  I never thought I’d see the day that I turn down chocolate!  I still have days when I’m just completely exhausted.  On those days I celebrate going to the grocery store! On the bright side I’m having more good days than bad now!  That’s really something to celebrate!

 

I have to end with a picture of T.J. holding my grandson Jax.  I think this is the first time he held him since the day he was born.  He was completely uninterested in holding him during the slobber and spit up days.  I honestly didn’t think he’d hold him until he was out of diapers.  I was so proud of him!

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Get out and make some memories!

 

 

 

What you should know before an Oophorectomy

One day after completing 15 rounds of whole brain radiation I went in for my Oophorectomy.  It was an out patient surgery.  My surgeon told me the recovery would be easy.  I shouldn’t be in pain and I should feel ok the next day.  Just take it easy and no heavy lifting.

Here’s what he didn’t tell me.  Don’t lay down after surgery.

I went home and went to bed.  I woke up the next morning in horrible pain.  Not abdominal pain, it was shoulder pain.  The gas that had been used to expand my abdomen during surgery had set up in my shoulder.  I should have slept sitting up in a recliner and I would have felt fine the day after surgery.  I wasn’t told that and I took pain meds and cried with shoulder pain for about five days.  It was bad!  If this surgery is in your future remember that and you should have a fast recovery.  I have four tiny scars from the incisions and they healed within two weeks.

Now for what was hiding in each of my ovaries:

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That’s a picture of a tumor that was in my ovary.  There was one in each ovary.  This is the largest one (2.0 cm).  How did a tumor this size not show on my scans?   The good news here is that we had it tested and it’s still er/pr+.  That gives me hope that the new medication I’m on can work on my bones and lung.

I go in for new scans next month to see if Faslodex and Ibrance are working.  I’m a little concerned because my tumor marker keeps getting higher every month.  Then in October I will have a new MRI to see what all the brain radiation has accomplished.  Until then I’m staying positive and living every good day to the fullest.  I’m also sleeping a lot.  I don’t know if it’s still exhaustion from radiation or my new treatment plan but there are days when I just don’t want to get out of bed.

I want to send a big thank you to everyone that has messaged, called and came by to share their love.  I even received  care packages from Australia (I ♥️You Emma!) and from Arizona (I ❤️ You Sally!)  You all make my world brighter!

Get out and make some memories!  💕💕

 

A Dollar for Tammy…My First Guest Post From The Ladies At Tea Time Emporium

We all share a common bond…..our admiration, support, affection and love for Tammy Carmona. Tammy’s personality and relentless positive spirit is infectious. You meet Tammy once and she becomes a part of your heart. Like so many of you, she has been a great inspiration to me and unbeknownst to her, has been my personal support in times of need. As her friends, we can now return the gift of support as Tammy fights her way through “cancerland” (as Tammy refers to it). The past 2 months have been a physical, emotional and financial burden for Tammy and her family.

We are holding a Fun(d) Raiser for “Tammy Carmona & Family” on Sunday, 7/24 at Frog Level Brewery in Waynesville, NC from 2 to 5 pm. For many of you, distance and personal restraints will prevent you from attending, yet would like to support Tammy. Mindful of everyone’s personal circumstances, we are embarking on “A Dollar for Tammy” campaign. In unity there is strength and many single dollar donations are powerful! Your single dollar donation will make our “A Dollar for Tammy” a huge success. Who knows, this strategy could become the saving grace for another woman in Tammy’s position.

Please see the attached flyer for info on making donations at the bottom of the page. Donations can be made at any TD Bank nationwide, by mailing to Tea Time Emporium 746 S. Haywood Street, Waynesville, NC 28786 or online by googling “You Care Tammy Carmona”. Please note that “You Care” site will automatically add a $1 additional donation to your donation. You can opt OUT of the additional dollar donation to “You Care” by clicking on the underlined link and changing that amount to zero dollar.

We invite you to support “Tammy Carmona & Her Family” and return the support that Tammy had provided to so many of us.

Click here to donate via You Caring

With heartfelt thanks and appreciation,

The “Fun(d) Raiser for Tammy Carmona & Family ” Committee

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Now a note from me!

I’ve never been one to complain or even talk about the financial hardships that come with a cancer diagnoses.  I’ve always been a giver and asking for help isn’t something I do.  I’ve spent the last year working with a beautiful soul, Nancy Powell, at Tea Time Emporium in Waynesville, NC.  One of the life lessons she has given me is that receiving is as good as giving.  She told me to not take the joy of giving away from the giver.  For me, this was a new way of looking at things.  I am humbled and so full of gratitude for the love that has been shown to myself and my family over the past two months.  There are no words that can begin to tell you all how much you mean to us and how much better our life is because you all are in it!  We thank you and we love you!💕💕

Whole Brain Radiation

I have survived 15 rounds of whole brain radiation.  Initially the hardest part was driving to Asheville and back everyday for a treatment that lasts less than 10 minutes. I videoed a session for those of you that may one day have to go through this.

Whole Brain Radiation   Here’s the link

It was a painless procedure.  My mask was latched to the table, everyone left the room and the radiation took a few minutes.  There was a smell that came with the radiation. It reminded me of Clorox.  The first 13 rounds were fairly easy on me.  I was dizzy afterwards and needed a nap.  I was surprised because I was expecting worse.  It hit me at round 14.  My forehead and my ears burnt so bad.  After round 15 I couldn’t hear and my ears smelt horrible.  I was told to take Mussinex to relieve pressure behind my ears.  I did that for a few days and didn’t notice a difference.  I ended up putting peroxide in my ears for a few days and my hearing is back!  I must tell you my oncologist advised against using peroxide.  It worked for me.  My eyesight also got bad with the last rounds of radiation.   I couldn’t read anything!  I’m using readers now and I feel them getting stronger everyday.  It’s been two weeks since my last round of radiation and the fatigue is extreme.  I’m so tired.  I just keep reminding myself that it’s over!  I have had a hard month!!  The day after my last radiation appointment I had my ovaries removed.   I’ll do a post on that soon.  I’m scheduled for the gamma knife and a new MRI in August.  Until then I’m going to get out and spend some time with my guys. I’ll end with some pictures.

 

This is my radiation mask.

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This is one of the Mets to my scalp.  Radiation healed all of them.  Let’s hope it’s working as well on the inside!

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This is a harsh one, but I share my truth with you guys.  My forehead after 15 rounds of WBR.

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Now for one that shows me on the mend!  It’s a wig!

 

 

 

 

MRI Results and A New Treatment Plan

What a week!  I’m exhausted, mentally and physically.  I had an IV steroid treatment last week to reduce the swelling in my head.  I was then put on an oral steroid that I am taking two times a day.  I’m not a fan of steroids.  I hate not feeling like myself.  They make me irritable and nauseous.  They make my blood glucose out of control.  They have relieved my headache, but I have decided I’d rather deal with a headache.  I quit taking the steroids yesterday.  Today I slept until 1 p.m. and I’m feeling a little better.

I saw my radiology oncologist, Dr. Smather’s, last week.  I really love her!  We went over the results of my Brain MRI.   She is confident that this is something we caught early and can control.  There are tiny spots all over the cerebellum (the back of my brain).  It’s almost as if someone has taken a Clorox bottle and sprayed it on my brain from behind.  Because these spots are scattered our course of treatment will be WBR (whole brain radiation).  I have always known I didn’t want to do WBR.  However, this is the plan.  This is what I will do.  My youngest son is 13.  I cannot discount any treatment.   I will do whatever I have to for the chance to see him graduate high school.  So, here’s the plan…

15 days of WBR starting this Thursday.  The following Friday I will leave radiation and then go over to the hospital to have my ovaries removed.  While all this is happening I will also be adjusting to the new chemo I will be starting this week.  When WBR is completed we will do a new MRI and decide if we can do targeted radiation to the tumor behind my eye or if we will gamma knife it.  Geez!   I believe this is going to be a hard month!! (understatement of the year!)

My doctors are confident, as am I.  I have so much left to do and so many more memories to make!  I am hopeful that this is just a temporary setback.

Thank you all for your love and support.  I will do my best to keep you updated.💕💕

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Here’s a picture of my Javiee and I on our latest road trip.  I’m focusing on a family cruise when this mess is over!  Take time to make memories!💕

Back to Cancerland

The past two years have been fantastic.  Zoladex and Femara have served me well, until now.  I ended up in the emergency room on our beach trip with a massive headache.  I was treated for a migraine.  My headache never went away.  I had blood work done at the cancer center when we returned home.  My tumor marker was on the rise.  Scans showed a tumor in my ovary, two on my hip, on my ribs and on my spine. A brain MRI showed it had also metastasized to my brain.

There are no words that can begin to express how devasting this news is to us!  What a change in only three months!  We have cried, screamed and cried some more.  There is nothing left to do but fight this.  My big girl panties are back on. (Thanks to words of wisdom from a dear friend, Anya)

So, what’s next?  Tomorrow I will see a radiation oncologist.  I will find out exactly what the brain scans show and get ready for radiation.  I will be starting a new chemo (Ibrance and Faslodex) next week.  Three weeks on and one week off.  I will be getting xgeva monthly for my bones.  I will also be having surgery to remove my ovaries.  Wow!  This is not what I had planned for this summer!  I will keep you updated.  I’m grateful to have all your support!  You all make my life brighter!💕💕💕

I have so much to share about our Little Pink Houses Of Hope trip.  Life has been crazy!  I will share pictures from our trip soon!

 

Little Pink Houses Of Hope

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I’m sharing exciting news today!  I was chosen to participate in The Little Pink House of Hope!  Our toes will be in the sand on Carolina Beach this time next week!  I screamed like a ten year old when I got the email saying I was chosen!  The Little Pink Houses Of Hope give people with breast cancer a break from life and a chance to reconnect.  We will be staying in our own private beach house for a week.  Food and activities are included.  Those of you that read my blog will remember we had a beach trip planned last summer.  Instead of the beach I ended up in the hospital.  I was devastated!  This trip is such a blessing to us!  We’ve been through so much over the past three years!  I’m really looking forward to some down time with my sweet Javiee and T.J.  I am full of gratitude!

Here is the mission statement for The Little Pink Houses of Hope:

To promote breast cancer recovery by offering opportunities for survivors to reconnect and celebrate life.

I celebrate life daily, but what better place to do it than the beach!?!

If you want to help people living with breast cancer please support The Little Pink Houses of Hope.  They are helping breast cancer patients get a new lease on life.  Treatment can be so harsh and cancer takes so much away from you.  Sometimes a break from reality can be the best medicine!  Click the link below to help!

Click here to support Little Pink Houses of Hope

Please Help Those Of Us Living With Metastatic Cancer

If all of my followers will take a moment and read and sign this petition we will have enough signatures!  Please take a moment of your time and sign!  Races won’t save our lives but research will!  Click the link below to show your support!  Thank you in advance!  You all make my heart smile!  All my love…

Please read and sign!  (this is the link)

WE PETITION THE OBAMA ADMINISTRATION TO:

Add metastasis research as a specific goal of the Cancer Moonshot

90% of all cancer deaths in the United States are caused by metastasis–the spread of cancer through the body. But the current Cancer Moonshot goals don’t include research into the causes of and treatment of metastasis. Metastatic research has been chronically underfunded, resulting in a continuing lack of understanding of metastasis and how to stop it. Although many of the moonshot goals may help metastatic patients, understanding the metastatic process is vital to saving lives and turning terminal cancers into chronic diseases. Making metastasis research a specific goal of the Moonshot will bring important attention and resources to bear on solving the mysteries of metastasis and providing better treatments for metastatic patients.

Happy Birthday Jaxon!

The joys of being a glamma!  My grandson Jaxon turned one this month!  I felt so blessed to be there when he was born.  I cried like a baby the first time I held him.  I can’t even begin to tell you how happy I was to be at his first birthday party!  He is such a happy baby and he has the sweetest soul.  He is the greatest gift and I am so blessed to be his glamma!  Thank you to my son, Kori, and to Emily for making me a glamma.  It is a title I treasure!💕

You know pictures have to follow!

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That’s my oldest son, Kori, Emily and Jaxon.

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This is Jaxon with his cake face.

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Jaxon and his Glamma (me)!

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That’s T.J. my youngest son.

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Grandpa Javiee with Jaxon.

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This is my precious Jaxon! Could he be anymore beautiful!?!

 

 

 

 

 

The Cantin Ketogenic Diet…How I went from 70 units of insulin a day to 0!

I will start with a link to a previous post I did last summer when I ended up in the hospital with type 1 treatment induced diabetes.

Treatment Induced Diabetes-The price I pay for my dances with Ned.

Since then I’ve been doing 40 units of long acting insulin every morning and about 10 units of fast acting insulin with every meal.  Even with that amount of insulin my last A1C was 10.6.  For those of you that don’t have a good understanding of diabetes, that’s a really bad A1C!  Injecting this much insulin into my body was frightening to me.  My research leads me to believe that insulin and cancer don’t go well together.  Seeing an A1C of 10.6 was even more frightening.  I decided to try and do something to get myself off insulin and get my blood glucose levels to where they needed to be.  My research led me to this book:

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I read the book in one night.  All the research I had done matched everything I was reading in this book. It was impressive and gave me the push I needed to give it a try.  Living with metastatic breast cancer has made me a skeptic when it comes to simple cures.  I wasn’t completely sold on the idea of a diet allowing me to be insulin free as a type 1 diabetic.   I found the author, Elaine Cantin, on Facebook and accumulated a wealth of information from her and her past posts.  I went shopping for “yes” foods and supplements from her book and began a three day fast.  I love food!  I was concerned about my ability to not eat for three days.  My Javiee was afraid he may not make it out alive! 😀  It was surprisingly easy!  My blood glucose was better than it had ever been.  I was extatic with the results but figured I would still need insulin once I started eating again.  Wrong!  I followed Elaine’s food recommendations and 15 days later I am still off insulin!  Not only am I off insulin, my blood glucose has never been better! I never saw 90 when I was on insulin!  The change in the way I feel is amazing!   My energy level is high and my pain pill count is at 1 a day.  That’s down from 5!  I am amazed and so glad that I found this book!  If your having issues with diabetes you owe it to yourself to read this book and give it a try!

As far as cancer goes, I can’t really say much about that right now.  Here’s where I’m at with that…

My last scan showed active cancer in my hip.  Scary and not what I wanted to hear!  I haven’t had “active” cancer in 2 years.  I still consider them good scans because the cancer hasn’t spread anywhere else ( this is life with metastatic cancer).  Our plan is to stay on the treatment I’m on (Zoladex and Femara) and do new scans in 3 months.  With those results we will make a decision on treatment.  It will be interesting to see the new scans and what kind of impact my diet has on them.  I will update you with the results.

Of course I have to end with pictures!  We’ve been living life and making memories! I am so blessed to be feeling good!

imageSnow Day with my Javiee!  You don’t work in North Carolina when it snows!

imageAt The Panther Stadium with my Javiee and T.J.  T.J. is bigger than my Javiee now!

imageMy precious little Jax! He will be 1 next month!  I love being a Glamma!

imageBecause I’m not a Grandma, I’m a Glamma!

 

Thank you all for your prayers and messages!  You make my heart smile!