Beyond Time for An Update.

Beyond Time for An Update.

I have been home a few days now. I’ve spent the last 10 days or so in the hospital. Unknowingly, In the hospital. I honestly thought I had been kidnapped. I know it sounds crazy but it’s not. My Mom and my husband were trying to get me up from my bed at my house. I would vomit every time they tried. I couldn’t speak to them. I couldn’t walk. I was completely unaware. They called an ambulance, if they hadn’t, I wouldn’t be here today. It seems to be the chemo therapy I was on caused Cancer-Related-Hypercalcemia. My calcium levels were so high, I was literally out of my mind. I’ll follow up on this later. Right now I’m just trying to give you an idea of what’s going on.

Though my brain looks better, I’m actually doing worse than I’ve ever been. I now have leptomeningeal metastases which have spread to my meninges and spinal fluid. It can’t get much worse for me. I have two more days of radiation. I don’t know what’s after that. So far I’ve heard there is nothing else to do.

Right now my plan is to rest and get through my last two radiation appointment’s. My doctor has said I can have no visitors until she sees me next week. The least little germ could kill me right now.

I’d love to see you guys, I just can’t. I saw my kiddos the other day, so I have a few pictures. For now that’s really all I know. I have to give this to God right now. I’m serious when I say I can’t even walk alone. My mama and my Javiee have been doing everything for me. Stop and think about that. It’s so hard, but I’m so blessed to have them here right now. I will update you all as soon as I know more. I love you all! Thank you for the love and prayers. Get out and make some memories!💕💕

Sharing My Family Vacation!!!!!!!! …………………………………………………………………………………… We just spent a week in North Myrtle Beach as a family. It was the best trip ever! 
 I was worried if we would even make it there. My arm was in severe pain and I was doing radiation treatments until the morning we left. I was in radiation at 8 am and we were on the road soon after. Thank you mama for driving! My oncologist prescribed me steroids and morphine to keep the pain flare ups away, it worked! Thank you Dr. Smathers! You know I adore you! The afternoon before we left I was going to let T.J. drive me around town ( He got his learners permit!!). My car wouldn’t start. I was devastated because it was after hours and no shop was open. A few years ago we went on a Little Pink Houses of Hope beach trip. I ended up in the hospital with brain mets. We planned a trip to the beach at Bear Island the next year and I ended up in the hospital with treatment induced diabetes. Was it going to be my car this time? I asked God “Why can my family not have a beach trip without something happening.” My Javiee happened to be at Auto Zone when I called to tell him the car wouldn’t start. He met a mechanic that said he would come to my house and look at it. He came out and put a new starter on my car and didn’t even try to overcharge us! Change of perspective……”Thank you God for letting this happen before we left on our trip and for putting that mechanic there”. I knew this trip was blessed! Here are some pictures……
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That’s my Javiee and I with our grand babies. Then my son, Kori, his wife, Emily, and our grand babies. Then my sweet mom and I. The next one is my oldest son, his wife, me, my mom and my youngest son.

 

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My grandbabies at the beach. My mom and I with T.J. at one of his favorite places. That’s me. Then my daughter in law, Emily, my mom and me again.

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That’s my mom and I, My Javiee and I, My youngest, T.J and I, My oldest, Kori, and I. Then Kori and I with my grandbabies.

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My grandbabies! I love being a glamma! That’s Jax and I at the pool. Then my favorite! This little lady has sas!

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My mom and granddaughter. My daughter in law, Emily. My oldest and youngest boys. My grandbabies at the beach. My mom and I in a shark head. My guys going on a helicopter ride

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That’s my Javiee and I on date night in a helicopter. I love this man!

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For our last laugh we stopped at Dicks. The food was horrible but it was so much fun to laugh at each other.

I love you all💕 Thank you for your love and support!   Summers almost over!  Get out and make some memories! 💕💕

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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New Brain MRI Results

I don’t like to do scans in December. I love the happiness that fills the air this time of year.  Bad scans could dampen that.  I’m so excited to tell you that 15 rounds of WBR and a CyberKnife session gave me a good brain MRI!!  Can we all do a happy dance!?!?!

This doesn’t mean I’m dancing with NED again.  I was on Ibrance and Falsodex for the mets to my lung, hip and spine.  It did nothing to keep those areas stable.  I was on it for four months and my tumor marker went up monthly.  My last scan showed progression in all those areas.  My oncologist changed my medication to Afinitor and Exemestane two months ago.  I have a new PET scan in January to see if it’s working.  I’m praying it is. The side effects are easier to deal with than the ones I had on Ibrance.  I’m dealing with mouth sores and little bumps that randomly appear in different places.  My pain medicine is keeping my spine and hip pain under control and I’m no longer completely exhausted. I’m actually feeling pretty good right now!  I feel so blessed to be here for another holiday season.  I think my New Years resolution will be to make everyday a holiday!

Merry Christmas and Happy Holidays!  Life is busy, slow down and spend quality time with your loved ones.  Keep your family traditions alive and make memories (they last forever!).

Thank you for all the prayers and love you’ve showered me with over the past 4  (almost!) years.  It means so much to me! 💕💕💕

Now I have to share family news!  Remember how I wanted to live to be a glamma?  Well, now I will be glamma again!  Kori and Emily are expecting in May.  Jax will soon have a little brother or sister.  I’m so excited!  I love being a glamma!  He will be 2 when his new brother or sister arrives.  Look at how big he is!image

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!  💕💕

 

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!