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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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!💕

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!💕💕💕