Hypercalcemia and Leptomeningeal Mets…..An Update

Hypercalcemia is a condition where the body cannot regulate excess calcium levels in the blood. The symptoms include thirst, frequent urination, confusion and other cognition problems, weakness and fatigue, reduced appetite, vomiting and nausea, irregular heartbeat, cardiac arrest, and coma.  The breaking down of bone mets can result in excess blood calcium and a diagnosis of hypercalcemia. This is what happened to me.   Paclitaxil worked well on my brain.  It also worked too well on my bone mets.   My blood work was always checked before chemo.  Once the bone mets started breaking down my calcium levels rose quickly. I felt nothing.  I didn’t even know I had vomited or urinated.  I was just out of my mind.  Watch those calcium levels!

My husband found me in the bed laying in vomit and urine.  I was purple, limp and completely unaware of what was going on.  He called my mama and 911.  I was taken to the hospital in an ambulance and wouldn’t have made it there alive any other way.  I had no cognitive thinking, I honestly thought I had been kidnapped.  When I recovered and looked at my phone. I had sent text messages to friends saying I was kidnapped and to get my son to help me.  I cussed out and fired doctors.  I was mean!  If you know me, you know I’m not that way.  My sister from North Dakota, my cousin, Teressa, and my grandbabies came to visit me in the hospital.  I didn’t even remember that.  I saw their pictures and still don’t remember them being at the hospital.  I was as close to death as I’ve ever been.  Things can change so quickly!  Speaking of changes, this is what’s going on now…..

I have leptomeningeal metastases.  It occurs when breast cancer spreads to the meninges, which are layers of tissue that cover the brain and the spinal cord. Intrathecal chemotherapy is an option.  It’s  delivered directly into the cerebrospinal fluid through an Ommaya reservoir, which is like a port inserted in the head, under the scalp. Sounds a little scary!

There are a lot of new accessories in my house and they are not pretty ones!

I now have a bedside toilet, a raised seat on my bathroom toilet, a rolliator (my fav!) a wheelchair and a bath bench is now in my bathtub.  My legs and my arms are so weak!  It’s hard to walk and hard to pull myself up.  I almost fell into my bathtub when I tried to get off the bathroom toilet alone.  My mama caught me.  The raised toilet seat is a blessing.  My physical therapist found it and brought it to me as a early birthday gift.  That brings me to where I am today.  They talked about home health care and hospice.  I chose to have home health care and physical therapy.  They both come by twice a week.  The nurse checks my vitals, they are looking better.  My physical therapist has me doing exercises.  I think it’s making my legs stronger.  I will see my oncologist in 6 weeks and we will see what’s next.

I’ve lived with metastatic breast cancer for almost 6 years.  I was initially told I would live close to a year. God has been good to me.  I have been blessed with grandbabies and a million new memories.  My prayer has always been to see my son graduate from high school.  He has 2 more years.  This is still my prayer.

Don’t take tomorrow for granted.  Smile, make someone smile, spread some love and spend time with your loved ones.  Those are the things that matter in the end.  You never know what life has waiting for you!  Make the best of it and get out and make some memories!💕💕

I love you all so very much!  Thank you for all your love and prayers!

October is breast cancer awareness month.  Know when you make a donation it’s actually making a difference.  METAvivor uses every dollar raised to fund metastatic breast cancer research.  Know where your money is going and who’s pockets it’s filling.  Give to METAvivor.  Support Metastatic Breast Cancer Research.

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http://www.metavivor.org/take-action/donate/

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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!💕💕

Back In The Chemo Chair….An Update

Xeloda has not been good to me.  My tumor markers are higher than they have ever been.  They are sitting at 1613.9.  It’s usually accurate with what’s going on in my body.  70 percent of my bones have been invaded by cancer.  We still are not sure if it’s new cancer in my brain or brain necrosis.  I will have new scans in another month to reevaluate exactly what it is.  If it’s necrosis then we don’t want to go cutting on my brain.  Wait and see.   For now I’m taking Paclitaxel.  I’m doing it once every three weeks.  It can also be given once a week for every three weeks to lessen the side effects.  My oncologist thinks once every three weeks is a better punch.  That’s what I’m doing.  It’s day two and I’m exhausted.  I feel so weak.  It’s actually hard to get out of bed right now.  I’m just dealing with it and resting.  It will be worth the down time if it works.  Some pictures from my first day back in the chemo chair. I’ll go in one day soon for a port.  My arm can’t handle this kind of treatment.  I did it, but my arm was on fire afterward.

I love you Guys! 💕  Plan something fun for the weekend!  Make some memories and    send me a picture! 💕💕  I’ll do a friends adventure post.  We may have cancer, but we’re still loving life!

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!

Hello April!

I’m happy to say hello to a new month!  March was probably the craziest, busiest, most stressful and most rewarding month I’ve ever had!

I flew to Vegas and filmed a television show (and signed a confidentuality agreement). So there are no details about the show that I can share with you. Sorry!  I would love to because I think it’s going to be amazing! You guys will just have to wait.  It was a fantastatic experience and I met the most wonderful people while doing this project.  My Javiee bought me a new wig for the filming and there was a professional makeup artist there so I felt beautiful…..here’s a picture!

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I have to include a picture with my Vegas partner in crime, Marilyn.  Ok, so no real crimes were committed, but we had a fabulous time together!  Thank you Marilyn for taking this journey with me!

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Two days before I left for Vegas my husband was on a plane to Mexico.  This was the stressful part of my month.  I share my family and my life with cancer with you all.  There are somethings that I haven’t shared with many people.  One of these things is that my sweet Javiee was illegal.  I mean walked across the desert for 6 days illegal.  He told me before we even started dating.  Honestly, I didn’t care.  I knew it wouldn’t be easy.  I also knew it would be worth it.  It’s been eleven years and I wouldn’t trade a minute of our time together for the biggest house or the fanciest car on the block. He has loved me during the good times and held me up during the bad.  He has worked so hard to help T.J. become the confident young man that he is now.  He is a grandpa to Jax and will always be there for Kori and Kristen.  We are all blessed to have him in our lives.

Sending him to Mexico for his immigration appointment was so stressful.  If denied he was facing a ten year bar from returning. Talk about nerve wracking!  He was approved and is home now ( the process took four years). He’s legal, has a social security number and a drivers license.  Talk about life changing.  Freedom (don’t take yours for granted)!  I have watched my Javiee be taken advantage of SO many times because he was illegal.  That won’t happen anymore.  Now is his time to get what he deserves and I’m so happy for him! And us!

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Here’s the sad part.  If I wasn’t diagnosed with cancer he would have never been approved.  He was approved because of a hardship waiver.  I know most people think you can apply and go through a process and become legal if your married to a citizen.  It doesn’t work that way if your here from Mexico illegally.  Now if your a citizen and want a Russian bride you can just go apply for a K-1 Visa and that’s that.  Ridiculous if you ask me.

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Here’s one of the first pictures that Javiee, T.J and I had taken together.  Javiee has always been there for us and I can’t imagine life without him.  We are so blessed to have him home!💕💕

The month ended with a baby shower, a week with our precious little Jaxon, a new car (new to us) and an all day wrestling tournament with T.J.

A few pictures from the baby shower.  Kori and Emily will be having a little girl soon!

imagePictures from our week with Jax.  He is the sweetest. I love spending time with him and I love hearing him say glamma!

imageHere’s a picture from the wrestling tournament.  It was T.J.’s first time wrestling Greco Roman and freestyle.  He came home happy with two third place medals.

I have to thank two beautiful souls before I end this post Linda and Windy.  Remember I told you my doctor wanted me to stop driving our 5 speed because it was aggravating the pain in my hip and spine.  We had planned on buying a new car when Javiee came back from Mexico and went back to work.  The immigration process took what money we had saved so we decided to wait until we could save money for a decent used car.  Having a car payment is not a good thing when you have cancer because you never know what medicines or treatments won’t be covered by your insurance the next month.  I lost the last new car we had because I had to pay for my first surgery and was out of work.  I thought it was better to just keep driving the 5 speed for a while.  Well, thanks to Linda and Windy I’m no longer driving that 5 speed.  They gave us a car this week.  How do you say thank you to such a kind gesture?  They are special ladies and we are so thankful to them.  We love you Linda and Windy!  I wish I had a picture of them to share!

What a month, right?  Six months ago I was doing WBR and a new chemo.  I was so sick.  It was the first time I had ever felt like it may be the end of my life here.  I remember a consult with my doctor about changing my meds.  My mom was there and she knew how sick I was.  She asked me if I really wanted to start a new medication and add more to what I was already dealing with.  I would do anything for more time/memories with my family.  I did start the new treatment regimen and I’m so glad I did.  One new medicine can change so much.  Look at the month I’ve had!  I would have missed this!  Donating to research is so important to those of us living with Metastatic Breast Cancer.  Please support Metavivor.  100% of your donation will go to research.

I Love you guys!  Thank you for sharing my life with me.  I know there will be the random person that comes across my blog with opinions about immigration and such.  It’s fine, your comments are welcome.  One thing that cancer has changed in me is that I don’t mind criticism.  I don’t need approval.  Think about your life.  Wouldn’t it be nice to be free, not to worry about what everyone else thinks.  Life is short do what makes you happy and make those memories!!!  Sending love to you all!

Please Help Those Of Us Living With Metastatic Cancer

If all of my followers will take a moment and read and sign this petition we will have enough signatures!  Please take a moment of your time and sign!  Races won’t save our lives but research will!  Click the link below to show your support!  Thank you in advance!  You all make my heart smile!  All my love…

Please read and sign!  (this is the link)

WE PETITION THE OBAMA ADMINISTRATION TO:

Add metastasis research as a specific goal of the Cancer Moonshot

90% of all cancer deaths in the United States are caused by metastasis–the spread of cancer through the body. But the current Cancer Moonshot goals don’t include research into the causes of and treatment of metastasis. Metastatic research has been chronically underfunded, resulting in a continuing lack of understanding of metastasis and how to stop it. Although many of the moonshot goals may help metastatic patients, understanding the metastatic process is vital to saving lives and turning terminal cancers into chronic diseases. Making metastasis research a specific goal of the Moonshot will bring important attention and resources to bear on solving the mysteries of metastasis and providing better treatments for metastatic patients.