Immunotherapy

We weren't able to get a good reading on my blood biopsy and I no longer have a tumor large enough to biopsy for a tissue biopsy so the next EGFR inhibitor is a no go for now. It was news to me that we had shrunk everything so much, so that part was fun info., but even with that I was starting to feel some pain and getting more off balance so my drs. decided to move on a new treatment. Immunotherapy . I've been excited to try this option and the timing seems good for it, so here we go. I'm having my first, of hopefully many, infusions now. If all go well the side effects should be minimal. His will be done!

Treatment Changes for 2016

Firstly, thank you everyone for your faithful prayers that have continued to carry us through and gives us strength. we feel your prayers everyday as we struggle through new challenges on every turn. 2016 brings me into my third year of living with stage 4 cancer. i can hardly believe so much time has passed and I thank God with a grateful heart for the time he has graciously given me.
     We knew a change was coming. To be honest, I was kinda hoping it would. I'm SO very over the whole chemo thing. The hard thing about wanting a change is wondering if I should be careful what I wish for. Is the "new" going to be worse than what I had? Or, will it even work? I'm still wondering these things, but the change wasn't my choice or because I wished for it.
    The future is unknown to me but not to the Lord. His love is perfect and so I don't need to fear the future. I think, "Yeah, but I could still die. My kids could be without a mom. Lewie could be going it alone. How will they recover from the pain of that?" I still go through these questions, almost daily, but I'm also reminded daily of how perfect His love is, and why that love casts out fear, even though our fears can become reality. His love is perfect! We can't understand perfect, but that means that that kind of love is seeking our ultimate best. Which we can have confidence that we will see. It's just hard and painful to wait for that, and while we wait it's tempting to grow discouraged and take our eyes off of the One who's love is so perfect. I've realized how like an Israelite I am; forgetting that I am loved in this way, and having to be reminded again. It doesn't take living with cancer to put one through this cycle. However, for me, it took living with cancer to give me a greater glimpse of how deeply I am loved and held. I have never been more confident of this perfect love as I am now. This knowledge helps in my battle with the fears.
             Okay, but the change. So, I had scans this week and they showed the same gradual progression of the cancer growing that the last few scan have shown. The brain metastases have however been stable, until this scan, so we opted to put off the change in treatment, but my labs started showing a decrease in my kidney function in December as well as some possible spots on my kidneys. In January I started having kidney pain and it has increased over the month. The kidney function issue is probably a combination of the chemo, and a tiny tumor that is pressing on an artery. Time to work on shrinking that, bad boy! So, we are bringing the Tarceva back in and I'm taking that along with Avastin .
      Tarceva is a targeting therepy pill specifically for those with EGFR mutation. I was on it in the
beginning, but it only worked for 7 months. It's likely to work again since I've been off of it for so long. They are keeping me on the Avastin, which is a Chemo I get infused with every 4 weeks, and it doesn't make me sick. The Tarceva made me very tired last time, but the chemo has wiped me out so I'm hoping I wont notice that too much. Also, a rash on my face and back, thinning hair, and anorexia... I'm not looking forward to all this but I'm hoping I'll feel better then I have been on the chemo, and that it works.
    There is a new EGFR inhibitor that has just been FDA approved that I could go on and I think it has less side effects. They took a blood biopsy to see if I qualify for it. This blood biopsy is new thing for them and pretty cool to have avoided the tumor biopsy, for now. We'll have those results in about 2 weeks, and if I test positive they will switch me from the Tarceva to Tagrisso (The NEW lateset and greatest).
    They are still scanning me every 2 month and keeping a close eye on some new shading in the brain that could be new metastases.  Full brain radiation may be getting closer. I hope not but if the brain metastases are eliminated, then I can qualify for a clinical trial. there are also other Chemo's they can try. I still have a few options left and hopefully when they run out there will be new ones available.
     In the mean time, I cling to God's promises, and His faithfulness to keep every single one. I am comforted that heaven is waiting for us at the end of all this struggling. That anticipation is becoming ever sweeter. Until then, we plod on taking one day at a time...

Bedtime prayers

     Post chemo I'm always a bit teary.  Today I was "touched" quite a bit. This morning I introduced my kids to the hymn, "Tis so sweet to trust in Jesus", We weren't even
through the first verse and Alton had his head down in tears. "Alton, what's wrong?" I asked. "This song reminds me of your cancer" he wailed. We plodded through the song but I almost joined Alton when we hit the last line of the last verse, "...And I know that Thou art with me, wilt be with me to the end." I confessed to Alton that the song reminds me of my cancer too, and especiallly that I can trust Jesus through it. I hope they learn the sweetness of trusting Jesus through suffering. I think they are. I think we are learning it together.
     Carter then asked me if I ever cry about having cancer. He was surprised when I told him I do quite a bit. I was surprised he didn't know that. Alton and I have had several cry fests together. Those sweet little loves completely undo me.
     Tonight was the first night in awhile that I felt well enough, and not to tired, to tuck them in and say prayers with them. Alton, sweet little love, "I love you, mommy. I wish you didn't have cancer. We are praying a lot." I don't deserve these little loves, but I'm so blessed they call ME mommy. His prayer was precious. Of course he prayed for my cancer to go away "and never come back, so that mommy can be on this earth with us for a very long time." He included his two other "regulars" and lovingly prayed that they wouldn't have pain, and for comfort.
     Carter was next. I was a puddle by the end of his prayer. He prayers every angle, for the cancer to go away, never come back, but if it does come back, not for a long time, and if you don't take the cancer away, help Mama to live for a long long time, so she can be with us. He prayed for others he knew were struggling with pain or suffering and then for anyone suffering that he's not aware of to pray for, he then prays. Then he moves on to the kids who don't have a mom or dad, or home, or food, or toys, that God would take care of them.
     This completely touched my heart. The prayer of this little boy for others, hurting others, hurting others that he knew and didn't know. I love his heart. I wonder how God is going to use him. How
will he mold that love for the hurting. Ah, bedtime prayers.... I love them! So yes, it's a predictable
teary time, but today was a doozy. I blame those little loves that call me Mom.

Scan week

There is so much that should be said that I too often neglect to say. Going back to my last scan is a good starting off point for this post. It was the first scan that there was not the "struggle" for peace. It seemed just there. I was calm and reading my book while my precious husband sat jiggling his leg up and down.  We both knew that these appointments can be game changers. I kept schooling myself that a bad scan is just a change in course not necessarily bad news. Just a change. Just a change. I was resting in that. And I was comforted by that.
    The nurse came in with little info. But when Dr. Neal came in he was giddy with excitement. And announced that he had good news. Lewis immediely thought, " it's gone!" I was reveling in, "it's not bad news".
     He went on to explain that there seemed to be some minimal shrinking in the main tumor in the lung. Very minimal, but the BRIAN! THE BRAIN! This was the exciting part. Only two of the brain metastases were visible. Only TWO visible. The others seem to gone. That's not supposed to happen. But it did. Looks like full brain radiation is pushed back a little deeper into the future and I'm still praying NEVER. But praise God, I got more than good news. I got a miracle. And my doctor knows it too. Yes, I still have cancer, but all these small victories are answers to my "more time" plea to my Lord.
     I love these lines of JJ Hellers song, "I don't know what you're doing... But I know who YOU are." It always makes me teary. It's truth. I wonder what on earth is going on, everything seems so messed up. But that's when I focus on who HE is. He is the controller, holder, healer, helper, promise keeper, grace giver, and so much more. He is peace. He is the reason I was not afraid of even bad news. Because although I don't always understand what He's doing, I understand who He is and that He
loves me and that He will not stop caring for me.
     There was a lot of prayer wrapped up in that peace. My own and I don't even know how many others. But I know they were praying for peace specifically. And God gave it very specifically. Isn't it amazing that the Lord always does exactly what he says he will do?
      Earlier that day I joined the Lung Cancer Support Group at the urging of my Dr. I rolled my eyes at the thought but when I thought about it some more I had the feeling that it was something I should attend. Maybe I didn't need the group but someone there needed to hear my story. So I went and my sweet husband who wanted to go even less than I did came with. That precious man is always by my side.
     I met some great people and was peppered with questions. Finally this, "so you've been diagnosed with stage 4 lung cancer, and you have a young family, but you have a positive attitude, how do you maintain that positive attitude amongst all that?" Well, here we go. I told the group that though my diagnoses rocked my world, it was because of my relationship with Jesus Christ, that my attitude is able to be positive.  I explained the peace He gives me, a peace that I am held, a peace that I have even with tears streaming down my face and my heart breaking into pieces. I told them that I know his heart is breaking too along with mine. But He also is calm because He knows the outcome and He has a plan. I told them I draw great comfort in the promise and anticipation of heaven and that one day, He will set all things right. I may have said more, I can't remember now. But I was surprised by a
few heads nodding in agreement with me. I wondered their stories and look forward to getting to know these people more. Afterwards, I talked to several of them for quite awhile and told the social worker that I would come back when my appointment aligned with group days. And I'm actually looking forward to that. May 6 is the next one I should be able to attend, Lord willing.
     I am praying that God will use me to point other hurting hearts to Him. He is the only comfort and so worthy of our trust.

"Be anxious for nothing, but... let your requests be made known to God."

   The topic of "fear" has come up a lot recently; in conversations, in my favorite daily devotion writers, as my kids contemplate which Disneyland rides they like, with old and young.  It's something we all deal with at varying degrees.

    My son, the worrier, will tell me about an ache or pain and ask, "is there such a thing as side cancer? Because my side really hurts." Or foot cancer, or tooth cancer... I'm seeing a trend as to where his mind is spent. Fretting over things he has no control over.  

    I hate that this is such a reality for him. My diagnoses and losing our TJ, has made this very real for him. It seems there is constantly a new person added to our prayer list because of the "C word". I hate this, and I'm grateful for this. Not for the fear but the opportunity it brings to learn, lean, teach, and model.  It gives me the chance to point him back to Christ when fears arise. It also reminds me that how I deal with my fear points him. Where am I pointing? 

   Greg Laurie talked about how we have normal and conditioned reflexes to fear and worry in his daily devotion this week. A conditioned reflex is something you learn or teach yourself to do through repetition until it comes naturally. When fears arise, does it produce worry or send me to the feet of Jesus in prayer? I loved the thought of making this a conditioned reflex in my life. That my natural reaction to fear becomes prayer. I long for my kids to learn this practice at a young age. It reminds of the song, "what a friend we have in Jesus". "...oh what peace we often forfeit. Oh what needless pain we bear. All because we do not carry everything to God in prayer." 

     I can carry the burden of my fear, or I can take it to God and experience the peace that He holds me even when my fears become a reality. I want to choose that! Every time. 

    I've been given a stark reminder that we have no idea how much time we have on earth. With that in mind, may it change my walk, and the way I love my Lord, my husband, and love my children. My time with them is short. Maybe shorter than I had planned. Maybe not, but thank you, God, for the reminder. 

    

That you may overflow with HOPE...

This is long overdue.
    July was a real game changer with bad scans showing the spread of cancer in my brain. At the time  we were watching my sweet cousin bravely battle his brain tumor. I was not feeling the bravery he displayed.  It was a huge blow to have the Tarceva stop working so quickly. I had high hopes in that treatment.
    We hit the year mark of my diagnoses early this month. It was very surreal to live out that week and reflect on what that week was like last year. I think the Christmas season will always bring a pang of the blow of that time.
     I've also been reflecting on the changes in my expectations. My desire is still the same: healing. But living with cancer for years wouldn't be horrible either. I'll be honest, I want it gone. The worry, the fear, the scans, the pokes, the poison, the sickness, the tears. But I'm learning to be grateful. I'm grateful this horrible treatment has stalled the cancers growth, I'm grateful the coughing has lessened and I'm grateful that I get to celebrate another Christmas with my kids and my sweetie. Another year of memories to give them. And yes, I had another year with hair.
    I didn't think I cared about that part but I do. That's the honest answer. It's really nice to go places and fake good health. I have also realized how beautiful it is for my kids to forget it at times and see me "looking healthy".
     "Hope" has been our theme through this year. That word has changed for me in these 12 months. It means even more now. Romans 15:13 has been our close companion of strength and comfort. "May the God of all HOPE fill you with all JOY and PEACE as you trust in him so that you may overflow with HOPE through the power of the Holy Spirit." I have always loved the word overflow in this version of the verse. It indicates that The Lord gives more than the just enough, he gives us an excessive amount of it. So much that it overflows.
     My hope was in my healing. And I still hope and pray for that. But my hope is in something more. My hope is in heaven, and that God has eternal good to bring from my suffering and that of my
family's. I see a lot of good in my healing. But God see's the big picture. The good I see is temporal
but the good He see's is eternal. I may never see that good this side of heaven but trust that he has it covered. It's never been so hard to trust, but trust, I will!
      God blessed us with good scans this week. It was beautiful to have this gift right before Christmas. To lay aside the fear for a little bit. The growth that the July scan showed has not recovered but the continued growth that each scan was showing stopped. Who knows for how long, but today, I'm grateful.
       I'm also grateful for the precious man God gave me to love, and to love me.  I get grumpy and tired, but he tirelessly steps in and lightens my load without complaint.  We didn't sign up for this but when Lewis promised "in sickness and in health" ten years ago to God and me, he meant it. And he shows me everyday. He is a beautiful picture of what for better or for worse looks like. This year has been rough and HARD, it has been a year of growing. Growing closer to each other and closer to our Lord. The best part of my day is when we get to sit in front of the fire together with our cup of tea and our devotions, sharing our favorites with each other. I love this man, and pray for years with him.
       My WBC is still not in a good place. They decided to treat me this week anyways in hopes that it will start going back up since we dropped the Carboplatin. Please keep us in your prayers for this and join us as we thank God for the good health he's given me in spite of my compromised immune system. It is simply by the grace of God that I haven't been sick yet. Another item of gratefullness.
    We wish you all a very Merry Christmas, and hope that you are struck this year by the miracle of God's grace and beauty of his love for you.

Raw thoughts on Birthday # 35

Here I am, the eve of my 35th birthday, and gearing up for my second cycle of chemo. Having positive thoughts about it being better than last time but also planning for a good week of feeling crummy and afternoon naps the week beyond that. The little bit of energy I have I anticipate putting into homeschooling the kids, which I love. But it cuts into spending time with my sweet friends that carry me through with cleaning my house, cooking Kerri-friendly-meals, organic produce runs, watching my kids, and anything else my heart desires or needs, they are there. Thanks dear friends and family. What would I do without you? I'm emotional tonight as I know we are going into another season of me being " in need". This morning I had to push down the feelings of mourning what is gone and will never be so that I could take my kids to their co-op.  I know I'm missing out on so much... And I'm missing it.
     I'm begging God for more time and that this chemo is healing the cancer that is ravaging my body. I don't want to go to Stanford tomorrow. I want to be with my kids, my family, eating chips and salsa at Chevys like we normally do. I wonder if this is my last birthday with them... Please God, give me more time with them, each day is a gift. I recognize it fully and cherish each moment. I can't believe we are living this nightmare. Is this real?
     The tears won't stop. With chemo came the emotional flood of tears at the drop of a hat.  I'm good though... The depression I felt when we first heard that there are many brain mets is gone. (Thank you, Lord!) but the tears come quickly. Emotians are raw, but I feel held carefully in Gods mighty hands. Lovingly held.  Because I am.
    There has been sermon after sermon, and devo after devo that has felt just for me. One of the sermons talked about God "sitting" on his throne. Sitting, not pacing because he has it all under control. He isn't anxious or worried, stressed, or nervous, He's in control and unnerved. I can rest in that.
   This may be my last birthday... But I can rest in that too. Because He's in control. I beg Him for more... But also trust His will. Because He is good. No matter what... HE...   IS...    GOOD!  Do you believer that? I do. With tears streaming down my face, and agony in my heart... I believe it! HE IS GOOD!