St. Blase day update – 3 Feb 2015

We went to the medical oncologist office today. So just to keep it straight, there’s the medical oncologist, sort of the main guys who keep everything in charge. Then there is also the surgical oncologist, who operates and takes care of things like this icky wound under my arm that’s still not healing from taking the chunks out in January. Then there is the onco-cardiologist, who manages the significant cardiac toxicities of some of the chemos that I’ve been on, and prescribes the medications to keep all that under control. Now we added back the radiation oncologist. He (used to be a she but she retired) uses radiation to cook cancer cells and fry them into oblivion. I saw him yesterday. I was on the fast track because the follow up MRI I had Saturday night showed lots of new icky places that could compromise my spinal cord, leading to cord compression which is a bad thing. 

He reviewed all the old scans and all the new scans and did a thorough exam and talked for a long time about what he found and what my options are. Basically the news is depressing. He is not so worried about the cord compression thing, because actually the high dose steroids to get the MRI helped that a bit. He is (and the rest of us are) more worried about two other things – how this cancer has just taken over and exploded just since early January, and about how the cancer has now grown to include something called leptomeningeal carcinomatosis. Once the cancer has free and unrestricted access to the fluid around your spinal cord and brain, it can pretty much zoom wherever it wants, fast. He showed us on the MRI where it was obviously growing, but it also can be other places that it doesn’t show up yet. 

They want to look at the cells, so next week they are going to do a spinal tap to find them. Turns out that even when you can see these cells on MRI, each spinal tap only has a 40 % chance of capturing cells. So they repeat it until they find the cells they are interested in. They treat this (often even if they don’t see the cells on the spinal tap) by infusing chemotherapy right into the spinal fluid, like right around your brain…. they often place a port, just like the one in my chest that goes to my heart, to stick the chemo in. It’s called Intrathecal chemotherapy. It sounds pretty awful to me. It is also complicated by my blood thinner medicine, which is way too much to go into here. Makes me glad I have a smart medical team, because we’re past my pay grade for sure,

Meanwhile yesterday they did placement CTs and tattoos for starting radiation therapy for my lumbar spine starting tomorrow. I have lots of pain and am losing function in my left leg, so hopefully this will help. 

The whole thing is pretty bad. I am trying to stay cheered up and brave with the help of so many of my friends here – Clifford Crosspatch who had so many friends saying a rosary of healing yesterday,Amber Gilchrist Anderson and Renee Tam andAmy Boroughs and so many others with photos of their babies that I love so much, my neighbors and church friends and medical team and Susan Ralphwho keeps me supplied with the best colors of cashmere and Sara Pressly who seems to have jumped right from retirement into full time medical transport and management and and and…. 

Plus, you know how I went on the adventure to California and Big Bang with Brian? Friday Sam and I (with the full support of the whole medical organization) are going to New York City for two days. Just like the other trip, we are going to really, really minimize activities, only doing a couple of important things, but focusing on the very best, and spending time making memories together. We have fabulous Lion King tickets and reservations at a Michelin starred restaurant (Merea) … 

And that’s probably more than you ever wanted to know, but I figured once I got typing I should keep it up because otherwise who knows when I’ll start again  So tomorrow starts radiation, Thursday starts cycle two of the Xeloda chemotherapy, Friday we go to NY. Sunday we pause the blood thinners. Monday we start back to daily radiation. Tuesday is spinal tap day. Wednesday i see the pain/palliative care folks. Thursday is infusion chemo day. Then next Saturday Jane and AJ and their boys come to be with us for a while. and now I am going to take more medicine and take a nap. I have grown too weak and am in too much pain to take boys to violin lessons anymore, so Dixon will do that tonight. That’s been one of my favorite things for 16 years, it really breaks my heart,. 

I love you all. Thanks more than I can find words for for all your support and prayers and photos and love. we are doing EVERYTHING we can to fight this, I promise.

21 thoughts on “St. Blase day update – 3 Feb 2015

  1. Elizabeth, Enjoy every moment with Sam in NYC. Lion King is wonderful.

    You have the heart and spirit of a warrior; we all know you are fighting with everything you have. Love and prayers. Nancy

  2. Prayers! Great choices–Lion King HAS to be experienced (good on Julie Taymor) and Marea is simply lovely. Make sure they seat you somewhere warm.

  3. Gosh, if L❤VE were enough to lick this cancer, you’d be nearly immortal.

    Hugs from RI and I’ll wave like crazy when you are in NYC

  4. Enjoy your special moments with your son. I pray for you and your family. Thank you so very ,much for sharing your journey. Peace love and faith. God bless. Pattie marren

  5. I love you! I love your attitude. I love your resilience. I love your love for your family and of life! You are an amazing person. Praying for you.

  6. Prayers for you. So wise to prioritize time for the people in your life. We all learn so much from you, though I wish there were an easier way.

  7. Love and love and prayers. I understand so well the broken heartedness of not being able to take the boys to violin (my son studies piano and organ and I am disabled from a brain tumor and in recent months my condition has been worsening and going out to lessons is getting **so hard**) I’m so sorry that it has come to that for you. {{hugs}} and prayers

  8. Elizabeth, I have followed this blog since it started. I don’t know you and you don’t know me. I just want you to know that even strangers pray every single day for you. Kara Tippet is another lady I have prayed to hard for too. She is like you with 4 children.

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