Tuesday, September 19, 2017

Hugs

September 6th 2017

Today my oncologist hugged me. He's been providing my care for the last seven years and I've never gotten a full on tight armed hug. I've gotten a shoulder pat, a "hang in there", but never a hug. That's how I know how serious this is. After he told me the news we sat there in silence for a few minutes and then I said, "this is really bad isn't it?" He just slowly nodded and said "yes."

Leptomeningeal Disease is something I've read about in detail in the past and I've been hoping and praying it would never progress to that situation. It's very rare and only a small percentage of cancer patients have the cancer spread to the meninges of the brain, and the cerebral spinal fluid- I think around 5%. Prognosis is very poor, and it's very hard to treat.

Nausea, stiff neck and headaches sent me to be evaluated, my brain MRI showed very clearly where the cancer was located. There was no question about it. My only question for my doctor was of course what can we do? We  already had a game plan for if I were to have disease progression while on Opdivo. I immediately started back on Tafinlar and Mekinist, and we will also continue Opdivo until we can find a clinical trial that will accept me. My doctor is getting in touch with doctors in LA and in Portland. Of course I'm hoping to be treated in Portland where we have the support of friends and family, but I will go anywhere that I may need to. At the end of the week we received a call from Dr. Taylor at OHSU. There are no clinical trials there that I qualify for. Next step is Providence, and then I'll have to look outside the state.

One thing that I love about my oncologist is that every since I've been stage IV, he never has given  me a time frame or an expiration date. He has never once said "six to twelve months" or anything else implying my time might be coming to an end, and I wouldn't have it any other way. I don't know whether he does this to keep me from becoming too upset, or that he knows I do SO much research I already know how serious this is and what my prognosis looks like. Either way, it doesn't need to be voiced to me. Only God knows when my expiration date is. Also, there's been studies that show that if you tell a patient they
 are dying, they do remarkably worse than if never told that. I believe it's largely psychological.

September 12th 2017

Today I met with McDreamy, (neurosurgeon) to go over those same scan results. He again told me the bad news. No radiation or surgery will help this condition. He officially told me he can't help me with this situation, and good luck. He also gave me a hug.. Hug number two by a doctor in one week's time.  He agreed that a clinical trial is the best way to go, and fast.

September 15th 2017

Today I saw my primary physician for an unrelated matter. Once I got him caught up on things he - you guessed it, hugged me! Hugs from new people that don't normally hug me make me feel like they feel I'm becoming out of options and I'm going to start going down hill.  Although it may look that way to them, I have no intention of going anytime soon. Somehow I still have confidence about my disease, and hope. God is in control.

5 comments:

  1. Well since I'm not a doctor, I'm sending a huge hug your way. Your last sentence says it all. He is in control and He has a plan. I have hope for you too. Praying on a regular basis for a clinical trial that will help. You are an inspiration to so many - even those that you have never met, like me!

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  2. Read "radical remission". You may get some ideas. It ain't over yet

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  3. You are correct in God having a plan for you and every time I pray I ask him to give you the strength and courage to make it thru everything he has planned for you. We love you and have faith

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  4. I'm with Barbara. Realistic and hopeful. Radical Remissions happen. ❤️

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  5. It is easy to have faith when blessings are pouring in but for you to be strong and confident in God during times of trial is truly inspiring. He's not finished with you yet. Remain hopeful in our God who can do miraculous things.

    I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.

    Isaiah 42:16

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