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!

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Brain MRI Results

I have to tell you I was anxious while waiting for these results.  I spent last summer doing brain radiation and I was really excited to get out and make some memories this summer! I’m so happy to say my MRI came back stable!  There’s nothing new!  Thank you all for your love, good vibes and prayers!  I feel so blessed to have you all in my life!💕

So what’s next for me?  Mexico!  I was going no matter what my results were.  I’m just happy they were good and I can go worry free!  My Javiee has worked day and night to make this trip possible.  I’m so ready to spend some quality time with him and meet his family!  It’s been a long time coming!

Get out and make some memories! 💕💕💕 I love you guys!

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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!

 

 

 

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!💕