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Where we are now…

It is Monday, April 23rd, and I have not taken any anti-cancer medication in 22 days. This should mean that I should be taking pain meds pretty much around the clock, should be having pretty severe pains in my liver area (right upper abdomen), should be having difficulty sleeping, etc. This is because my tumors should have grown significantly during this interim – as they have during each of my interim periods between treatment plans. And while it’s possible that they have grown a lot, I’m guessing they haven’t grown quite as aggressively because my pain has not increased as it has during other interim periods. I am taking a bit more pain meds than usual but as far as pain goes, I am doing fairly well now. The strange back pain I was having has resolved. Thank you, God.  

The goal is to begin the next clinical trial I am to be on on April 30th, one week from today. This new trial is one that will attack the PI3 K pathway within my cancer cells. I have a PI3K mutation, and so just as the last trial helped significantly for a time, this too should help significantly for at least a time, because we know I have a mutation here.

You may recall that last time we talked I said I would be starting a trial that attacked both the P and the B mutations that they know I have. Well, that trial is still in the backpocket as another option to try when we’ve gotten all we can out of this trial (the P only). The reasons we are doing this P-only one first are: 1) it had an earlier slot opening so I could start treatment again earlier and 2)if we were to try the other trial first (attacking both B and P) then we would lose this P-only one as an option because of their trial’s exclusion criteria.

The new trial is also an oral medication. The side effects are essentially the same as the last trial I was on, which is definitely good news. Also, my friend who is a brilliant geneticist (doctorate level, works in research at Vanderbilt) told me that the P pathway is a really strong one, stronger than the B pathway. She thinks it is probably the one more responsible for the rapid growth of my cancer and more responsible for its stubborn nature, refusing to be killed.

I will have to spend significantly more time at Sarah Cannon. I will have to be there at least once a week for a couple of months, and some of those times I will be there for very long days  – as in 8-10 hr days. This is so they can draw labs throughout the day, etc. It doesn’t mean I will be hooked up to machines or  to an infusion pump for hours at a time. I am thankful for that. It might mean I get a lot more writing done, as I will have to pass the time doing something!

My geneticist friend tells me I am on the cutting edge of cancer treatment. This is the newest stuff, the cutting edge, and I am reminded how thankful I am to live in Nashville, TN. When I am at Sarah Cannon (SC), I am one of the few from here in town. In fact, most of the nurses and schedulers assume I am from hours away, because that is the case for most of the people being treated there. As we discussed what trial I would do next, the research nurse and doctor were careful to explain the differences in how much time I would be required to be at SC. I listened politely but then assured them that is not what I would base a treatment decision on. They said, “Yes, not for you, but for most people we see who have to arrange airfare, hotel stays, etc, it is a big deciding factor for them.” I am so blessed to be here. I have to be away from my family so very little in the grand scheme of things. Thank you, God.

This week I will be completely busy all Wednesday and Thursday doing preliminary testing to start this next trial : echocardiograms, EKGs, fasting and non-fasting bloodwork, eye exams, skin biopsies, etc. We are trying to get everything done so that I will be able to start next Monday.

So how am I feeling now? Mostly pretty good, all things considered. I have pain in my abdomen when I breathe at all deeply, when I yawn, when I laugh, when I twist, when I stretch my shoulders back. I am very sleepy a lot of the time, and seem to hit a wall about 5 o’clock every day where I just cannot keep my eyes open. I am mostly still very hopeful that this is all going to be completely healed one day, but I have times where I get very distressed and down.  More on that later maybe. Every morning and every night I put my face to the ground in the most humbling position I feel I can get in, and I beg. Most of the time I beg through gushing, body-wracking tears, for God to have mercy. For Him to allow me to stay here for my boys, for Him to spare them the pain of losing their mommy. For Him to spare Brian the pain of losing his wife.   

Then there is also this:

 

 (that’s a quarter on my leg)

And yes, this all itches like crazy. Like CRAZY.

 

 

 

The dermatologist determined by biopsy that this is dermatitis, and said that basically means it is an allergic reaction. I praised God that it wasn’t more serious.  He said he wanted to just “watch it for awhile.” No one seems too concerned with figuring out what I have had a reaction to. And as I think back to when it started (which was sometime in the last week of March), I can’t figure out what it could possibly be. He said it was a very atypical presentation of dermatitis. I said “Welcome to my life.” Nothing is simple or straighforward with me. And if I’m going to have a skin issue, I’m going to have a big one. I don’t do anything half-way, huh?

So now you know the latest. I hope to be starting a new trial next week, which from the outside will look a lot like the old trial except for more frequent and longer hospital visits.

Please pray that this skin issue miraculously resolves and does not complicate or prohibit further cancer treatment. Please pray that my body responds well to the new drugs, and of course mostly that the cancer is killed by the new drugs. Please pray that I will continue to find meaning in each day and will not have to search desperately for a reason to get out of bed at all, as I had to today.

Please pray for Jesus to just come back and get us. I am so ready to go Home with all those I love.

As always, I thank you for caring enough to read and to pray. I know your prayers are holding me together.

My heavenly Father,

You never give up on me, and I refuse to give up on you. I know you are wise beyond my understanding. I believe that you are good, that you are love, a deeper love than I could possibly understand based on our weak human version of it, and that you bless those who love you. I do not understand anything about my life right now, but I am thankful you don’t ask me to. So instead of thinking about my misery today, I will count my blessings. I will tell you as many things as I possibly can today that I am grateful for: for the sunshine, for my car, that there is gas in it, that I don’t have to worry about my next meal, that I don’ t have to worry about pain thanks to pills, that my boys are happy in their safe, nurturing schools and that I don’t worry about them while they are there, that my husband has a good job and I don’t worry about his faithfulness to me or to You when he is away from me…
This is where I will put my mind today. I love you, God, and I love you, Jesus. To the moon and back a billion quadrillion times… 

Sara Walker





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21 Responses to “Where we are now…”

  1. Sarah Jenkins April 25, 2012 at 7:56 pm #

    Sara,
    Though I do not know the pain of cancer I do know the pain of stillbirth. Everytime you write about your sweet Anna and honestly share your feelings it rings so true to me. You put into beautiful words emotions I have struggled with for 5 years. Thank you from the bottom of my heart. I pray for you daily.

    • Sara Walker April 26, 2012 at 9:36 pm #

      I am so sorry that we have stillbirth in common. But I know that God wants to use that experience in your life for some good purpose, if He hasn’t already ( I suspect He already has, though you may or may not know about it yet). I pray on your tough days that you will lean even more heavily into His strong arms, for He can handle it. He can hold you up. Thank you for encouraging me.

  2. Clara Hinton April 25, 2012 at 6:39 am #

    Dear Sara,
    Every day I am praying for you asking God to give you healing, relief, and peace. I’m especially praying that this new treatement will be the one to kill the cancer in your body forever.

    May you be filled with the Spirit of God today to overflowing.

    I’m especially praying that you’ll get complete relief from that crazy itching, and that the rash will disappear altogether. Oh, how much I’m praying for that!

    Hold on…God is at work, and He is hearing all of our prayers!

    My love and prayers to you,

    Clara

    • Sara Walker April 26, 2012 at 9:43 pm #

      I love that -“hold on, God is at work”. I don’t know why, but it hit me as a very awesome phrase tonight.

  3. Tony Watson April 24, 2012 at 11:45 pm #

    Sara, we know of your suffering as you keep us up to date with treatments etc, but to SEE some of the evidence, as on these photographs, really brings home to us that this is a terrible journey that you are travelling…Also that this skin ailment is only a relatively minor part of your suffering…We will continue to present you often to our Lord and Saviour in our prayers…From the bottom of our hearts Sara, we want for you and your entire family, an easement of your pain, an improvement in treatment, a clearing of this skin condition…But above all, we ask our God to mend your body and return you to full, active health, to be able to enjoy your young family for many years..Love from our home to yours…GF Tony and Pauline x

    • Sara Walker April 26, 2012 at 9:44 pm #

      I am sorry if the pictures were too much, GF Tony and Pauline. Love from our home to yours as well.

  4. Sarah Sanders April 24, 2012 at 6:37 pm #

    Sara,

    I am praying for complete healing for you.

    Because of Him,
    Sarah

  5. katie April 24, 2012 at 2:54 pm #

    Thank you so much for your honesty and your sharing of what you are going through. You are affecting hearts and souls that you may never know.
    Praying for healing and comfort to you and your family.

  6. Linda Ramsey April 24, 2012 at 2:49 pm #

    My heart aches for you. I will continue to pray for your complete recovery while asking for His Will to be done. I thank you for your courage in allowing us into your life. You are such a blessing and inspiration in my life.

    In Him

  7. Ann McAlister April 24, 2012 at 9:45 am #

    Thank you for helping me. I think of you in the morning and I “hit my knees” thanking Him for another day and for your influence in my life. I also pray that your trials will end immediately with the miracle that I want for you of immediate healing. He is glorified by you no matter what and I appreciate you showing that to me while you go through these trials. Thank you Sara.

  8. cecelia Shelton April 24, 2012 at 7:00 am #

    Sara as I sit here reading your comments about what you are going through I feel so ashamed that I am complaing about having MS. I know that I will have many trials to face in the future and I only hope that I will face it with grace and faith in God that he will carry me through it. I will be praying for you for God to ease your pain and suffering. May your days be filled with peace and love.

  9. Barbara McKeel April 23, 2012 at 9:56 pm #

    I read that you had a really rough day. I cannot imagine all of the “ups and downs” that you go through every single day and night, but I certainly do appreciate that you share with your readers how that it is possible to continue to love the Lord through your incredibly painful last 2 years! And I pray for your healing every day.
    Barbara in St. Louis

  10. Eva April 23, 2012 at 5:15 pm #

    Sara,
    I will continue to pray for God to completely heal your body! It is so beautiful to see that your mind and spirit have not been affected. No, the devil can’t have that! Specifically, I am praying Psalm 41:9 “The Lord will sustain him on his sickbed and restore him from his bed of illness.” I am also praying for a special protection for your boys and husband. God has so got this!
    In Him,
    Eva Haier
    Katy, Texas

  11. George Goldman April 23, 2012 at 1:09 pm #

    Still praying for you. Thanks for your deep writing. It is helpful to many.

  12. Susan April 23, 2012 at 1:05 pm #

    So happy that the back pain is gone and I love your take on living in Nashville and being thankful to have Vanderbilt right here. I am praying that the cancer is killed by the new drugs and that the clinical trial will be a success. Praying that the dermatitis goes away too. Remember, if you need a Sarah Cannon driver and buddy during the long (or short) days, I’m your girl.

  13. Carolyn Skelton April 23, 2012 at 1:00 pm #

    God bless you, Sara. When you are down on your knees, I pray you feel the support of all of us who are there beside you in the Spirit. Thank you for reminding us to count our many, many blessings each and every day – and to savor.

  14. Phyllis Brown April 23, 2012 at 12:24 pm #

    Sara, I do so pray so hard that the new drug will work for you and no side effects from it. I know that God has you and the family in his arms that all the tomorrows will be better for you. As I have said before you are such an inspiration to me.I know you feel discouraged some days, but he will see you thru these times. He will give you clarity of thought, wisdom and peace. God will never leave you alone. My heart goes out to you and your precious family.

    In Christ Love,
    Phyllis

  15. Brooke Semanchik April 23, 2012 at 11:41 am #

    Sara,
    I read this post through tears. Just imaging all that you are enduring. Your strength, your faith, your love for all just amazes me. I wish i could, like so many others, just take this all away from you and heal you…but I know that God can and will take care of you, dear Sara. We can continue to pray, continue to love you. Love to you and your sweet family always.

  16. r.elliott April 23, 2012 at 11:39 am #

    Amen to your prayer…continued prayers for you and your family.

  17. connie leach April 23, 2012 at 10:54 am #

    Still praying– Sometimes it seems that some of the people at my church that have gotten cancer are those with very beautiful souls and spirits, the ones with exceptionally strong faith– that have a certain look in their eye– a look of wisdom and grace. Its as if GOD is burnishing them– is that the right word– making them glow until you can’t hardly stand to look at them. Just a thought– still praying– You are beautiful.

    • Frances Palmer April 23, 2012 at 2:49 pm #

      Dear Sara, I am praying Double Hard for you right now. Please keep your faith.
      God will take care of everything.
      I Love You, Frances

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