What Living With Advanced Breast Cancer Looks Like…A Healthline Article

I was in Mexico when this Healthline article came out.  I was one of the women featured and I wanted to share it with you.  I especially loved what Mary Gooze had to say.  It mirrored what I said.  💕

Here’s  the link…..

http://www.healthline.com/health/breast-cancer/understanding-and-managing/this-is-what-looks-like

Thank you Healthline for continuing to represent the metastatic community.  I have lost so many friends to this disease.  We need to talk about it.  We need funding for research.  We want to live!💕💕💕

 

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Scan Results

There are a few impressive words on my scans this month.  My favorite is STABLE!  It says I have widespread bony metastases that show NO PROGRESSION since 02/06/17.  I’ll take it!

So where are my mets?

In my T3, T5, T6, T7, T11 and T12 vertebra.  There are multiple mets in my lumbar spine.  L3 is the worst and it hasn’t grown in the past three months.  There are multiple mets in my sacrum, iliac, pubic rami and my right femur.

Are they painful?

Yes.  Some more than others.  There is one on my spine that causes shooting pain if I move a particular way.  It’s close to a nerve.  I take hydrocodone and get on with life.

I also had brain mets and I have a brain MRI scheduled the first of June.  My last brain scan was clear.  I’m praying for the same result!

Remember the tumor in my lung?  Well, there is stable scarring in the left upper lobe.  No evidence of lung metastasis! Wow!

The pea sized knot in my neck seems to be my immune systems way of dealing with allergies. Good News! Gotta love it!

It’s always good to hear stable and nothing new!   What’s a girl to do?  I’m off to Mexico soon with my Javiee.  He’s working two jobs to pay for our trip (imagine not seeing your family for 11 years!).  Our tickets have been purchased and we’re going no matter what my brain MRI shows.  Time to make some memories!!    I love you guys!💕💕💕

 

New Scan Results

My latest scans showed progression to my ribs, spine and pelvis while I was on Ibrance.  I have multiple new pelvic and femoral lesions.  My spine has many new lesions (T5, T7, T8 and T12).  The good news is there was no new growth in my organs and the tumor in my lung is 2 cm smaller. My tumor markers are also still dropping.  I’m at 132 now!😀

I have a lot of pain in my hip.  My oncologist was concerned and thought I may need a pin in my hip. He referred me to an  orthopaedic oncologist, Dr.Gajewski, I loved him!  He’s a great addition to my team.  After x-rays and an exam he said no pin!  The pain is muscle and nerve pain from my spine.  I aggravate it by driving a five speed.  I guess it’s time to get another car.  He also said yoga will help.  Time to start a yoga class!

As of February 8th I have lived with metastatic breast cancer for 4 years.  Though I’m sure I had it years before I was diagnosed.  I find it sad that I was told I didn’t need a mammogram until I was 40.  I can’t help thinking at 35 I would have caught it before it spread.  It is what it is.  I’m thankful for the past four years.  Even during treatment, my days have been filled with memories.  I’ve had more time with my family.  I’ve watched T.J. grow into a young man.  So many special people have come into my life the past four years.  I am so grateful.  Let’s not forget….I became a glamma!  I’m so in love with little Jaxon.  He is perfect.  In May I will be a glamma again!  To a precious little girl.  I hope she looks just like me!!😂

Living with metastatic breast cancer isn’t easy, but I’m living!  That’s all that really matters. Get out and make some memories!  I love you all!💕💕

 

Look at my new wig my sweet Javiee bought me.  I love it!  My hair is beginning to come back on the sides.  The top is still bald.  I call it a nohawk.

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Tumor Markers

There are a lot of different opinions when it comes to tumor markers.  My first oncologist tracked my markers and believed that they gave her an idea of how my treatments were working.  My new oncologist doesn’t worry about them as much.  I feel like I’m one of the lucky ones that can follow tumor markers.  When taxol failed my tumor makers rose.  We changed treatment and they dropped.  The same goes with Femara.  I went to Ibrance and my tumor markers climbed to 694 (CA 15-3) and 410 (CA 27-29).  My markers have never been so high!  We changed my treatment to Afinitor and they dropped.  I’m at 189 now.   That’s still not a good number.  I want to see it under 30 again.  For now I’m grateful to see such a big drop!

I’m scheduled for a new bone and pet scan the first week in February.  I have a lot of pain in my lower spine and my neck.  I know there was progression when I was on Ibrance.  The question is how much.  Back to waiting!

Until then I’ll keep taking my pain meds and enjoy some time with my Javiee (he’s off for a few weeks!). T.J. is keeping me busy with wrestling matches.  I walk into a match with no energy and leave as the cheering mom.  He’s doing really well.  I won’t miss a match even if I have to drive an hour to get there.  I’m just so thankful to be here to see him participate.  There’s no way I would miss one!

Ok, one more story to share!  My favorite Christmas song is The Christmas Shoes.  I play it every Christmas.  This year for Christmas Kori gave me Christmas shoes and had the song playing when I opened them.  I cried and cried.  It was a special Christmas full of special gifts but this one made my heart smile.  I know this song will always make Kori think of me.  Memories, the only thing that will outlive us!  Get out and make some!  I love you guys!!💕💕

 

I have to include a picture from Christmas!

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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!  💕💕

 

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!

 

 

 

 

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!

A Big Thank You To Healthline!

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I received news yesterday that my blog was chosen as one of Healthline’s Best Metastatic Breast Cancer Blog’s of 2015!  I am honored to be included in this list.  I knew nothing about metastatic breast cancer when I was diagnosed.  I found solace by reading some of these blogs.  You can find the list here:

The Best Metastatic Breast Cancer Blogs of The Year

I want to say thank you to Healthline for not only recognizing my blog, but recognizing the metastatic breast cancer community.  I am grateful. I wish more organizations would follow Healthline’s lead.  Metastatic breast cancer needs to be talked about.  More of the billions of dollars raised every year in the name of “the cure” needs to go to metastatic research.  There will be no cure until that happens.

Thank you Healthline!

 

Living On Vicodin

I’m serious about the title! Lately, I can’t accomplish anything without my pain meds.  My hands are still numb 60% of the time.  They are so swollen that I can no longer wear my rings.  I didn’t think it was possible, but my body aches have also increased.  Forget ninety!  I feel like I’m one hundred!  I’m honestly not sure what’s worse, the cancer or the treatment.   Having said that, I must tell you my tumor marker is now down to 58!  Fantastic news!  It was over 300 before I started Zoladex and Femara.  So for now I’m going to stick to my treatment plan and keep my Vicodin prescription filled.

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That’s my Javiee and I.  We celebrated our one year anniversary this month.  We’ve been together for close to seven years.  We didn’t actually get married until last June.  I have to share a picture with you from that day because I was bald.  Now I have a little hair.  Brown hair!

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No matter how many pain pills I have to take.  I’m still smiling and living life!  You never know what’s in store for you tomorrow, so enjoy today!

I Love you guys!