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.

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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/

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!💕💕💕