I’m dying

Today we met with #bestdocever and we talked about how I am doing health wise. The reality is this: I am dying. My brain has bled from the mets that are in my brain, and I’m still experiencing problems from those bleeds. We are having them treated with whole brain radiation, which is hopefully killing them, but will know when we are finished with radiation how that went. This course of radiation should be complete in the middle of October. In September I spent several days in the hospital with pneumonia and sepsis from the pneumonia. We had to leverage morphine to combat the cough so that I could get out of the hospital. The X-ray in the hospital showed that 1/3 of my right upper lung was white from pneumonia. I had to take time to recover to try to breath. 2 weeks later, I’ve had another lung x-ray that still didn’t look good. It got better, but now its back. It makes me tired a lot. It’s exhausting walking to the car, the bathroom and I ride around in a wheel chair. I find myself winded a lot. We don’t know if this will get better, but I’m able to get around without coughing too badly. 

 My platelets have remained extremely low, 150k-300k is the normal range. Mine have been as low as 8k and as high as 52k out of the ICU. When my platelets are below 20k, I’m not allowed to have whole brain radiation, so I’m having almost daily infusions of platelets to raise the level high enough to make that bar of 20. Starting this week, I’ll have HLA platelets twice a week that will hopefully do a better job of raising my platelet count and allow continued radiation. If they work, great, if not, I’ll go back to having daily infusions of platelets. My overall blood chemistry has been off for weeks, so I’m not able to have any chemo right now. Chemo goes after fast dividing cells, which hits cancer, but also my bone marrow. Until my bone marrow recovers, my overall blood counts will be off (white blood cells, red blood cells, platelets, etc.).

 When I talk to #bestdocever today, we talked about the amount of time left. He told me that that he thinks I have about 2-4 months with brain radiation and no further treatment. We have discussed Death with Dignity which is an option in our state. I’m grateful to have a doctor who supports what ever I need, whither I choose that to be Death with Dignity or other options. 

 I don’t want to die. I don’t want have the conversation with the children about me dying. I don’t want to have to tell them that Mommy will die soon. I’m in denial. But someday, I’ll have a conversation with them and I have to decide how to make this work. In the mean time, there so much advocacy work I wish I could accomplish; there is so much work that our community needs. When I ask myself “what advocacy to do for our community?” I think about Jenny Grimes, who helped found MetUp with me, and I ask myself “Will this help save Jenny’s life?” If the advocacy will help keep people like Jenny alive, then the advocacy is worth doing. If it won’t help keep people alive, then it isn’t worth doing. 

 I can’t do the work anymore given how sick I am. I hope others in our community will remember that the only important thing they can do as advocates; the thing that is most important, is keeping people alive. I know its not easy, but it HAS TO BE DONE. It has to. I’ll do my best, as time goes on, to talk about the life I’m having to live. I can’t share my story all the time, every day, but I’ll keep doing what I can. I’ll hope that somehow I’ll get better. And if I can’t, I’ll live the life I have as best I can. 

 I’m grateful to all of you for supporting me, and I wish, oh how I wish, things could be different. I love all of you. 

22 thoughts on “I’m dying

  1. I discovered your blog before you had cancer and long before I became a mother. There was something about your writing that said to me, “Follow this one. You’re gonna need it.” So I sporadically checked in and continued to follow even after you were diagnosed. You’ve completely changed the way I look at donating to breast cancer charities and awareness versus research. I now share this information with every woman I know. I just wanted to let you only there are many lives you’ve touched far beyond the world of cancer. I’m sad for you right now, angered that this just shouldn’t be, and yet pray for the least amount of pain for you and your family going forward.

  2. Beth, we haven’t met but I do know your pain and think of you often. Your advocacy has reached thousands. There are no words that can convey my heartfelt desire for you to have more time with your family, for this to go away.

  3. I tried to think of something wise to say, but really I have no words for what you are dealing with. I’m sorry.

  4. Prayers that God’s loving arms hold, comfort and help you through. You are loved, will always be remembered, and possess a huge amount of respect.

  5. Beth, Thank you for everything you have done and continue to do for all of us. You will always be an inspiration to me. I hope you have time for many more memories with J and the kiddos. There is nothing more important. It’s time for you to rest and just be. I cannot think of you and your tireless work without thinking of the Shannon Curtis song you inspired. Together our voices won’t die, until the day that they hear us. Hugs and much, much love.

  6. Beth, my heart breaks for some many reasons. Thank you for sharing this, your story, your heart, your pain, your desire, everything. I think of you as you tell your children the one thing we hope we never have to tell our children, ever. A thing we hope we could prepare for and yet most likely we still wouldn’t. You are stronger than I can ever imagine being and yet I know that does not help this at all. My continued words would be like ramblings, falling upon ears too full of their own thoughts to hear, rightfully so. I ache for you.
    KL Reddy xoxoxo (Friend of your father and Jazz)

  7. Hi Beth,
    You have made all who know you better advocates. Heck, you’ve made us all better human beings. Pretty darn remarkable the things you’ve accomplished and still are accomplishing. I so very much wish things could be different too. We love you, Beth. You and your dear ones are in my thoughts.

  8. Remember me? We met in Seattle a few years ago and I was in awe of your advocacy work and your determination to make a difference in all of our lives. Because of you I continue to scream and holler for a cure as do the rest of us. You are the leader we needed who drew attention to this disease. Thank you for everything and am sending a giant hug to you and your family.

  9. You are amazing, Beth! What you have done for MetUp and other advocacy. What you have been through to have as much time with your family as possible. My thoughts are with you and J and the kids. I hate that you have to be thinking these things.

  10. Beth,

    I have no words…only prayers. I cannot begin to tell you the gift you are giving your children with this blog. This written legacy of advocacy and love.
    When my boys were 7 and 10 we had a death talk…we were just talking about fears (I was doing chemo at the time). My youngest son wondered where they would go when it was my week (we do week on/week off parenting time). My oldest one (forever a caregiver) just didn’t want his little brother to be scared.
    I’m so sorry your talk has to be more in depth and I wouldn’t even know where to start.

  11. Omg my heart cries for you and your children – cancer sucks and I wish we did more for stage 4. God bless you I am sending love and light xoox I will help with advocacy too

  12. Beth, I want to say THANK YOU. I have followed you and admired you ever since I first learned about you. You’ve done SO MUCH for all of us and I am grateful for you and everyone else who sacrifices their time/health/life to help others. It’s now time to take care of you. I think of you often, and like you, I wish there was more, because you deserve more. We all do. I wish you peace with every decision you make (and more time).

    You are loved. xoxo
    Rebeca recently posted…Time machine: where to go from here?My Profile

  13. I’m so deeply proud of you my friend. You’ve done so much for so many and even now you still want to keep going for the masses. That’s a true hero. Your children and family have so much to be proud of. I hope you can be selfish enough right now to spend all of this precious time with them. I love you so much and I’m a better person for knowing you.

  14. Beth, I found you through my work and started reading your blog starting at the beginning until right around the time you were diagnosed. I have never met you (though as fate would have it we now live in the same city) but I love your voice and I love who you proudly are. You’ve left a message that people will keep shouting for as long as they have it in them. Thank you. ♥️

  15. Right now, you need the time for you. The work will be done as others step up and take it on. Right now it’s time for you Beth to negotiate this phase of life. I hope for lot more for you but I hear what you are saying too. You HAVE made a difference. A life so well lived and that I hope and pray extends more for the sake of your kids and family.
    I wish we had a cure. A way to stop these assaults on your body and spirit. I wish for no more suffering. Hugs Beth. I hold on to hope. But hear what you are saying. I am in denial with you.

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