6 Years With Metastatic Breast Cancer

I want to tell you all as of February the 7th I have lived for 6 years with Metastatic Breast Cancer. It’s been a roller coaster ride! I wanted to post on that day but I’ve been so sick lately.

What I want to say is initially I was told that I had a year or so to live. We have no expiration date and statistics are old. Have faith and enjoy every “feel good day.” Get out and make memories. Your doctors don’t know your path in life. They don’t know when your day is.

Thank you all for your love and support over the past six years. You really do brighten my days! I love you all!💕

Leptomeningeal Metastases…Is it a death sentence?

I know, what a title. This seems to be what I’m hearing and sometimes reading is even worse. This is one of those cases.

Leptomeningeal Mets are a rare complication of cancer in which the disease spreads to the membranes (meninges) surrounding the brain and spinal cord. It occurs in approximately 5% of people with cancer and is usually terminal. If left untreated, median survival is 4-6 weeks; if treated, median survival is 2-3 months.

I’ve been given a death sentence before. One year to live and I will soon hit six. I understand this is bad. I see the reality of the situation. I’ve given this to God. I still have my faith.

I also have the option to have intrathecal chemotherapy. It’s basically putting a port in my brain with a catheter that will send chemo therapy to my spinal fluid. I’m sure most of you know that there is nothing I won’t try to have more time with my loved ones. I’m researching this now. Your input is welcome.

I’m walking. I still have to do a little and take a break. It’s better than not getting out of bed at all. I am in a lot of pain. My bones are covered with cancer. My ribs on my right side are broken. I didn’t fall are anything! They just broke. I have to be very careful when moving around now.

My new scans came in. They show my brain tumor is gone and all of my internal organs are cancer free. Ironic that I’m now dealing with Leptomeningeal Mets.

You know my tumor markers have always been right about the amount of cancer in my body. 30 is normal and they are now 2,238. They have never been that high and I’ve never been in so much pain. So prayers are welcome and I will let you know what’s next soon.

I was blessed with another holiday season with my family ( pics below) and I’m still praying to see my son graduate from high school.

Thank you all for being with me for the past six years of treatment. My hope is that reading this blog has helped you in someway. I think the most important thing to take away from it is that everyday is a blessing. You never know what’s coming. Disconnect and spend time with your loved ones. Get out and make some memories. That’s what matters in the end. 💕💕

Pictures!

Winter Lights, Asheville Matching pajamas is a tradition in our family. That’s my Javiee and T.J Tradition carried on.💕 Kori, Emily and my grandbabies. My Javiee and I That’s me with My oldest son and grandbabies.

Check out the angel in the background, I paint now when I can’t get out.
T.j., my mom me and Kori.

That’s T.J and I.

Still Recovering

I have to tell you all I’m walking around the house better. I walk a little and take a break, walk a little and take a break. I am on strong pain medication for my spine. Most of the time it helps but there are days that it doesn’t help the pain at all. I do what I can and I’m thankful for being able to do it.

I haven’t really been Christmas shopping much this year. I always love getting out at Christmas. This year I can’t get to my favorite stores but I’m thankful for the times out I’ve had!

I went to the Winter Lights with my family and the grandbabies. I even drove there and back! I paid for it with massive leg pain the next day. Somethings are just worth the pain. I’ll post a picture.

Now my plan is to see my oncologist on January 2nd. We will go over everything and make a plan. Right now it seems the only option is to put a port in my brain and try to get another medication to work. I really don’t know until we talk. Then I’ll do my research and figure out what’s next. Until then, I’m just enjoying what I can do. I love the holiday season.

Thank you all for the love and prayers. I believe in them! Happy Holidays and Merry Christmas! Sending you all love!💕

Rest and Recovery

I have to update you all because I was in really bad shape in my last post. That was the closest to death I’ve ever been. The chemo therapy elevated my calcium levels so much that it almost killed me.

I came from the hospital and had a home care nurse visit twice a week and a physical therapist visit weekly. My vitals slowly became better and my strength started coming back. I can walk again! I’m not back to where I was. I can walk around inside my house. I can get out of the car and make it inside the grocery store to the wheelchair. Oh, the joy of going to the grocery store again for the first time! I can’t drive and still have to take a lot of breaks. I can’t do steps, but I do see progress!

I made it outside on Halloween and sat around a bonfire with my family! Memories💕. I will include pictures.

I see my oncologist again on the 28th of this month. Until then my plan is to rest and try to recover more.

Thank you all for the love and prayers. They mean so much to me!

Enjoy the holiday season and make lots of wonderful memories!💕

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/

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!💕💕

Dropping Tumor Markers!

After one triple dose of Paclitaxel my tumor markers have dropped from 1615.9 to 999!  It wasn’t easy, but so worth seeing such a big drop after one treatment!

I was down for a while and was extremely weak.  I still managed to have a day out with my grandbabies Sunday.  My legs were still weak.  I sat down with Evie and T.J. had to help get me up.  First to my knees, then to my feet.  Exhausting but so worth it!  Here are pictures….

Then they spent the night with me on Monday!  I miss them so much after chemo!  Jax always has to have a pizza party in our bed and Evie wasn’t feeling well that night.  I was just so happy to spend time with them!  More pictures…

Now I’m off with my Javiee to see Lynyrd Skynyrd this weekend in Atlanta!!  I come home to port surgery on Tuesday and chemo on Wednesday!  At least I’ll have a good weekend before!

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

Paclitaxel (Taxol). Back where I started.

I’m back in the chemo chair. I’m revisiting Taxol, the first chemo regimen I ever did. It worked the first time so I’m hoping since it’s been 5 years it will work again. I’m doing three rounds at once every three weeks instead of one round every week for three weeks. I was told the side effects would be harder but liked the idea of only going once every three weeks. I’ve had and I’ve recovered from round one. I actually like doing three rounds at once. I was exhausted for eight days. I even fell when I stood up to get out of bed because my legs didn’t hold me. It left me with a nasty rash that cleared in a few days. My port has been removed because it had cracked. We went into a vein in my arm which was a mistake. It burnt my arm and my fingers. I’m having a new port surgery before my next round. I had a little nausea and the skin is peeling off every one of my fingers, top and bottom. It’s not painful, just ugly. I can deal with these side effects. I’m just praying it works! Here are some pictures of what round one left me with……

I should be having my next treatment this Tuesday. I’m putting it off for a week because my aunt and uncle gifted me with Lynyrd Skynyrd tickets for next weekend! I grew up with that band! Not missing that!

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Thank you Aunt Cindy and Uncle John! You couldn’t have ever given me a better gift!❤️

Last week my sweet mama drove me almost six hours to see Kris. We talked and had an 8 hour food fest. She’s doing so good! It made my heart so happy to see her! We had pictures made. They will be here soon and I’ll share them then! I love you mama! Thanks for always being there!

Here’s the cherry on top! T.J. started 10th grade! He was in 4th grade when I was diagnosed. I cried like a baby once he left for school. I’m so blessed!

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I love you all! Thank you for the love and prayers! Thank you for sharing my life with me!❤️. Now 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!

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! 💕💕