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!

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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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!

 

 

 

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!💕