Time for an update and a Happy Dance!!

This has been a month full of scans for me.  PET Scan, hip x-rays and a brain MRI.  All of my results were stable with nothing new.

Time for a Happy Dance!!

Stable doesn’t mean cancer free. It doesn’t mean I feel great, or even good. It just means the cancer that has taken up residence in my body hasn’t grown. I have good days and I have bad. I live with a lot of pain. Still, I don’t let that stop me. If I want to do something, I do it. I may pay for it the next day, but it’s always worth it!

I feel so blessed.  I remember hearing I probably had a year to live over four years ago.  Believe me when I say I don’t take a minute for granted.  The past four years have been filled with new adventures, memories, milestones, family, friends and tons of love.  I’m a Glamma x2!! My Javiee is legal!!  I watched T.J. leave for his first day of high school last month!! (I cried!)  These are the things that keep me going.

Here’s something that touched my heart this week……

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This made me think of a very special person in my life.   When your down, feed the good, share a smile, spread some love, get up….get out…and make some memories!!

I love you guys!💕💕

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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!💕💕💕

 

My hair after WBR

I’ve had so many people ask me about my hair after doing whole brain radiation.  Hair is so important to most people, it defines you.  I have always had a head full of blonde curly hair.  Those days are gone!  I started losing my hair the second week of WBR.  Instead of waiting for it to fall out I shaved my head.  About three months after WBR it started growing back.  I was so excited!!  About six months later I realized it wasn’t going to come back completely.  I had what I called a “nohawk”.  My hair grew in on the sides and on the back of my head but not on the top.  My oncology radiologist said the radiation skims the top of the head and it may not grow back there.  A year later and no hair is growing on top of my head.  This is what it looks like…….

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I don’t think it’s ever going to grow back on top.  I just keep shaving my head.  I honestly don’t mind being bald.  That’s the least of my worries!  95% of the time I walk around bald and happy to be alive!  I have beautiful wigs and  I wear them if I go somewhere special with my Javiee,   My favorite….

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Here’s a picture of my cousin Teressa and I.  If you see me out and about it’s usually like this…..bald.  I’ve embraced my baldness!

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That’s my hair story.  Thank you guys for all the love you send my way!  I love you all!!! Now get out and make some memories!

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!💕💕💕

 

Tracking My Rising Tumor Markers

I’ve lived with metastatic breast cancer for over four years now.  My CA-15-3 has always indicated when something was awry.  It was 22.8 in December 2015.  In June of 2016 it jumped to 169.8. For this reason we started checking my tumor markers monthly.  I’ll share from that point on below:

July 2016                  267.6   This is when we found brain mets.

August 2016            565.0

October 2016          694.0

November 2016     691.5

January 2017          167.0  This was after WBR/Cyber Knife.

February 2017        132.2

March 2017             159.2

April 2017                172.2

May 2017                  183.0

We weren’t concerned with the first rise.  It can happen for many reasons.  After two more months of higher numbers we decided it’s time to do scans.  I had a chest and abdomen CT Wednesday (results next week).  I also have a brain MRI scheduled for the first week in June.  It’s another wait and see!  I have to tell you I Feel Good!!  I go on that.  It may sound strange but I don’t even worry about results anymore.  I just get on with life until result day arrives.  Life has been good to me lately!  Wait until I share what I was blessed with this week (for those that don’t follow me on social media)!!!!!!!  That will be my next post. Until then I’m sending you all love!!!!💕💕

Get out and make some memories!!!!!!

 

Thank You Healthline!

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Today I was notified that my blog was chosen as one of Healthline’s Best Metastatic Breast Cancer Blogs of 2017.  Thank you to Healthline for recognizing my blog and The Metastatic Breast Cancer Community.

Find other metastatic breast cancer blogs here:  http://www.healthline.com/health/breast-cancer/metastatic-breast-cancer-blogs

 

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!  💕💕