Saturday, August 22, 2015

Blessed with a wonderful wife.

Okay, I just want to go on the record here.  I don't want to brag but I may have the best wife a man could ever ask for.  JoLynne is simply amazing.  I am SO SO grateful for her.

Yesterday was a difficult day.  We finally got hold of the researchers from Houston to talk about our MRI results.  Dr. Gottschalk is the principle researcher there and we talked to him on the phone.  It was his feeling that the MRI showed progression of the cancer.  By the written protocol associated with his experiment his hands are tied.  So essentially we cannot at this time go forward with the HER2 trial.  He is a kind man but he is bound by how the experiment was written.

This is such an emotional let down for me.  When they told me in Houston that my blood result was the best that they had ever seen I was so hopeful that we had finally found the miracle that we have searched so hard for.  Now with this MRI it seems that door is closing for us.  It breaks my heart.

My son Seth is so wise.  He is visiting right now from Boston.  When we picked him up from the airport he told me.  "Dad, we are going to find the way.  I truly believe that.  I believe that if God doesn't want you to go through a certain door that He will close that door to you.  At that point or soon thereafter he will open another door that He wants you to go through."  I have worried so much that I wouldn't be smart enough or in tune with the spirit enough and that I might miss the next door when it presents, I wouldn't see it for what it was.  I told Seth what I was worried about.  My sweet Seth just looked at me and said, "Dad you are plenty smart and I have no doubts about you being in tune or worthy.  Look dad, if God has gone to the trouble of preparing a path for you to escape it would make no sense for Him to hide it from you.  You will know that path what it presents."  I have leaned on those words from Seth.

Okay, with all that said, the door to HER2 seems closed at least for now.  I asked the doctor if he can hang onto those cells in case we need them in the future.  He told me that of course he would.  That he would keep them for at least 4 years.  I then asked him what he thought I should do.  He told me "Eric, there is a new drug on the market called PD1.  It is showing great promise.  I really think you should consider trying that.  It isn't approved for your disease, only melanoma right now, but maybe your oncologist there could get an exception made for you to use it in osteosarcoma."  It is so interesting to me that my own oncologist had mentioned the exact same thing to me just two days earlier and had in fact already started the paperwork to seek approval.  Also, Dr. Wang, another researcher from Houston had mentioned it also about a month ago.  And finally, my brother in law from back east who is a super smart physician had mentioned something to that effect as well.  It seems like another door is opening.

PD1 is what Jimmy Carter is on right now.  Cancer cells have the ability to hide from the body's natural immune system.  It is almost like a cloaking device for your Star Trek fans or in more general terms it is like Stealth technology.  The idea behind PD1 is that it turns off the ability of the cancer cells to hide and therefore let's the bodies immune system find the cancer cells.

A few months ago, Shanelle found an article about using oxygen to help the immune system better find cancer.  The research is early but it is coming out of Boston.  Another way that cancer hides is by depleting oxygen around the tumor.  Cancer is able to live in pretty low oxygen conditions but the bodies T-cells need lots of oxygen.  Essentially the body's T cells find the cancer and when they get close to it they kind of fall asleep because there isn't enough oxygen.  So, they don't do their job right.  The initial research was done on mice.  The mice were intentionally given breast cancer.  Some were then put in a chamber with 60 % oxygen and the rest were just left normal.  Basically the ones in the chamber got better with no drugs, the others didn't.  They have not yet done the tests on humans.  Two days ago when JoLynne was saying her prayers she felt like God wanted us to reconsider this research on oxygen.  I called my dear friend and physician Steve Berry and he gladly hooked me up to have an oxygen mask in hopes that it might help.  I have long ago learned to never ignore my wife's impressions.  So now I am on oxygen.  Perhaps this is another door opening.  Here is a link to the article.

http://www.nbcnews.com/health/health-news/could-oxygen-make-cancer-therapy-work-better-n317446

Yesterday night I was exhausted.  With all the talk with doctors in Houston I was feeling the strain.  JoLyyne and I love to walk together.  As we walked JoLynne stopped me and said. "Eric, look up.  Look at how beautiful the clouds are."  They were beautiful.  Then she said, "Eric, we are going through some hard times right now.  I think our motto needs to be "Look up"  Boy I love that woman.

Last night I was having a hard time sleeping.  I think it was the steroids combined with the new oxygen mask I am wearing.  Anyway, I got up at about 1:00 am and just couldn't go back to sleep.  I even walked around the cul de sac for a while barefoot in my pajamas.  I just couldn't get my mind to settle down.  Finally about 3:00 am sweet JoLynne, tells me 'Eric, lay down and I will rub your feet until you fall asleep."  She proceeded to do that and I was finally able to fall asleep.  She is just amazing.  I love her so much.

7 comments:

  1. I am in tears after reading your last 2 posts. Bless your hearts. Thank goodness for the loving support of our Savior to help us through these very difficult times. Not only do you have the best wife ever, but she has the best husband! Sure love you two and will continue our prayers for you. Roma

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  2. Okay, I will amend my post by saying that I have the best wife a man could ever ask for and the best friends a person could ever ask for.

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  3. You are both such great examples of how husband and wife should be. The support, love and affection you have for each other is so strong and I aspire to be that kind of couple with my Scott. Thank you for your example. Love you both

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  4. Have you looked into hyperbaric chamber? I would think this would better oxygenate the tissues. I'm sorry for the recent setbacks. Praying for the right door to open next. Also a phrase I have enjoyed as if late: Divine Empathy. He knows.

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  5. "I had a distinct impression, "Eric, when you come to fork in the road, you will have the guidance you need. You are not at a fork in the road.""
    Remember when you wrote that awhile ago? I thought at the time that it was significant. I am glad to see that you are being guided -- you are like the pioneers in the Martin & Willie Handcart Company -- you are coming to know God in your extremity.
    And I'll add my 2 cents to the Jimmy Carter drug. As I heard about it on the radio I thought to myself, "This sounds like what Eric needs."

    Romans 8: 28 "And we know that all things work together for good to them that love God, to them who are the called according to his purpose."
    The whole chapter really, but also this: "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us."

    Truly, God's glory is being revealed in you. We love you and think of you constantly. ~Mark & Julie

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  6. Seth is so very wise. What a great response! And my sweet Aunt JoLynne is a heroine of mine. When my husband was in the hospital in Dubai, it really helped me to think of wonderful wives like her so I could be better (more patient too) for my husband. Tell her I love her & pray for her too. I have so much faith in all of these new opportunities. Love you all.

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  7. Every time I read one of your blog posts I find my tears flow freely (which makes for some interesting moments at work...). Most times I cry with joy for the beautiful witness of God and Christ that always weave their way through your posts. But there are times when I cry with sadness at the pain and suffering my friend endures daily and my inability to help him.

    I am so grateful that you have such a wonderful bride that is there to be such an amazing "help meet" for you. (I've always loved the phrase "help meet" as I know my wife will someday help me meet the Lord as I'm too imperfect to get there by myself...).

    The children continue to pray for you nightly. Know you are in all of our thoughts and prayers.

    e.

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