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. ๐Ÿ’•๐Ÿ’•

Pictures!

Winter Lights, Asheville Matching pajamas is a tradition in our family. Thatโ€™s my Javiee and T.J Tradition carried on.๐Ÿ’• Kori, Emily and my grandbabies. My Javiee and I Thatโ€™s me with My oldest son and grandbabies.

Check out the angel in the background, I paint now when I canโ€™t get out.
T.j., my mom me and Kori.

Thatโ€™s T.J and I.

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30 thoughts on “Leptomeningeal Metastases…Is it a death sentence?

  1. I continue to pray for you daily. I am sorry you are in such terrible pain. But still smiling. God bless you and keep you and make his face to shine on you and grant you peace. Love that your painting!

    • Thank you Melanie! I was crocheting, my hands canโ€™t do that anymore. My painting isnโ€™t perfect but it keeps me busy. I try to paint special little things for family. Thank you for the prayers! Sending love๐Ÿ’•

  2. I am sorry you are in such terrible pain. Although I do not know you, I have followed your story and think of you and your family often. I pray for strength and comfort for you all. You have taught us all so much — not just about cancer, but about strength and resilience and love of family. Sending peace and light. xo

    • Thank you! Itโ€™s not easy, but you know that! I hope to join you in February for that 6 year mark. Six years of dealing with all this. We need Wonder Woman tee shirts! Sending love and thank you for the beautiful comment!๐Ÿ’•

  3. Tammy you are such a brave, strong loving person I admire your strength. I now have crippling Ra. Attacking my feet now. But I will continue to get up. I pray for you and your family and I look at the strength you have with this horrible cancer . Love to you Girl and hug your Mom for me. ๐Ÿฆ

    • Thank you! That foot pain is the worst! It also sets up in my ankles. Yes! You will continue to get up! Itโ€™s so hard, I know, but it helps to move around when you can. It will keep you from losing more strength. I remind myself daily and make myself get up, even if Iโ€™m back in bed 20 minutes later. Sending love and Iโ€™m here if you ever need to chat.๐Ÿ’•๐Ÿ’•

  4. You are the strongest, bravest and most loving woman I know..and still so full of love no matter what challenges have come your way…This breaking my heart. Not only for you but for your most beloved Boys, And no matter what comes next, know that you have spread great joy and much love to all who have known you!! I love you my Friend and am so sorry that this is where your journey has taken you. And when your journey does end and your pain is done, I know there will be a special place for the most special woman I know in Heaven.

    • Thank you Vicki! Iโ€™ve had a hard few months. My bone pain is a little more controlled. Itโ€™s still there. I donโ€™t want to sleep all day everyday. If so I could up them. Right now time with my family and being aware is most important. Constant pain is definitely draining! Sending love and hugs your way!๐Ÿ’•

  5. The word sad doesnโ€™t come close to how I feel about this news. I will remain hopeful that your care team will find better pain relief for you and hopeful that your disease can once again be slowed in its progression.

    • Thank you Lisa. Itโ€™s been harder than ever lately. My bones are so painful. They are covered in mets. My oncologist says he is really surprised Iโ€™m walking. It scared me to see how shocked he was when he saw me!

  6. Tammy, as always you are in our prayers for relief from pain, complete healing and restored, lasting health. I was thinking about you and TJ and how awesome he is…. that’s a direct reflection of you! Although I don’t know all your family, I have a feeling they are quite awesome as well. I just felt the need to tell you, well done!

    • Thank you Gina! Iโ€™m so proud of him and I hate that he has to deal with this. Itโ€™s just as hard for our family members. We keep an open line of communication with him and always show him reports and tell him the truth about whatโ€™s happening. I believe it helps him. It also helps me to know there are good people like you there to support him. I miss being an on the go mom and luck that women like you still step up to keep awesome programs like SAVE going. Sending love!๐Ÿ’•

  7. Hi Tammy, You are such a brave woman to have gone through all that you have. I do not know all of your histories, so please forgive me. Have you looked into natural methods of healing? I have a friend with cancer I am trying to help. She had to stop the chemo and radiation and is employing natural methods. It is not easy for her because her family support is not good. However, and I realize you may know about these things, but I must share them with you anyhow. The Chris Beat Cancer website; he has a short 10 part video series. I am sure you don’t need all 10 videos but some of the videos I think you could benefit from; like the one on supplements and nutrition. He offers the program videos free once a year, (the whole program is more than videos, but my friend could not afford it) and this last year I downloaded them for my friend. If you would like to get these from me I could email them to you. Also here is one of his interviews that I really liked, maybe you will like it too. Praying for you. https://www.youtube.com/watch?v=s-tkmjqyxLo

    Chris

  8. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

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