Three weeks ago I stopped using the clinical trial medicine because of a terrible skin toxicity side effect. The medicine came out of my body in the form of a rash and pimple like sores. After lots of oatmeal baths, meds and Psoriasis shampoo I've survived! Though my outbreak was mostly on my upper torso, face and scalp, it definitely made me feel even more empathetic for Job! Poor Job and all those boils! (Job 2:7)
Last week's appointment showed that all of my blood work was back to normal except for my hemoglobin, which Dr. B says will improve over the next several weeks. My energy and shortness of breath has improved this week, so things are looking up!
Many have asked if I'm afraid....or angry....or disappointed. It is so odd that I feel none of these things. I truly believed that God gave me this Kras clinical trial right here 15 minutes from my house. I believed he was going to use this trial to heal me. Yet he quickly took the trial away with no other option dangling in front of me. Yet, the peace that I feel about it is unexplainable.
Right now as I'm typing God put these lyrics in my mind from Casting Crowns song, "Praise You in the Storm". These lyrics sum up my feelings better that my own words can today.
_________________
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
#castingcrowns #praiseyouinthestorm #cancersurvivor #S4C #stage4
Wednesday, August 24, 2016
Thursday, August 4, 2016
A Definitive No
What a week its been. Although I've taken no additional trial meds since Saturday morning the effects continue to wreak havoc on my body. It is as if the poison has to exit through my pores. Its been very difficult to have such a sore head and face, but I think it looks worse than it feels at this point. My blood counts continue to decline keeping me pretty low energy, but the muscular/bone deep type of fatigue and nausea has all left. Anyway, I'm on the mend and trying to be patient about the slow progress rate!
Before meeting with my doctor yesterday I was a bit nervous to hear what he would say. I felt at peace about stopping the trial, but realized it would leave me questioning that decision if he felt we should treat the symptoms and push through a bit longer. I was praying about this when my doctor came into the room. He didn't look at me very long when he confirmed we needed to stop the trial because of too many harsh side effects. I was thankful and relieved that we agreed. He explained that the trial side effects should not be harder on me that doing the maintenance chemo, and this certainly has been worse. I've had to do another round of blood work, an EKG and Echo Ultrasound of the heart to show if any damage was done during my 12 days on the trial. I'll have a weekly appointment to make sure that everything goes back to normal physically and document the progress.
Something that was overshadowed by the starting of this last trial was the fact that my July 14th scans showed NO NEW GROWTH. We are so grateful for this gift! It also helps make it easier for us to walk away from this trial knowing we have some time to search for the "next thing".
Thank you for your prayers for a clinical trial. Please keep praying for another trial and pray that God will lead us, preserve life and glorify himself in the process. May we continue to live faithful in spite of this long lingering disease.
With love. XOXO
Before meeting with my doctor yesterday I was a bit nervous to hear what he would say. I felt at peace about stopping the trial, but realized it would leave me questioning that decision if he felt we should treat the symptoms and push through a bit longer. I was praying about this when my doctor came into the room. He didn't look at me very long when he confirmed we needed to stop the trial because of too many harsh side effects. I was thankful and relieved that we agreed. He explained that the trial side effects should not be harder on me that doing the maintenance chemo, and this certainly has been worse. I've had to do another round of blood work, an EKG and Echo Ultrasound of the heart to show if any damage was done during my 12 days on the trial. I'll have a weekly appointment to make sure that everything goes back to normal physically and document the progress.
Something that was overshadowed by the starting of this last trial was the fact that my July 14th scans showed NO NEW GROWTH. We are so grateful for this gift! It also helps make it easier for us to walk away from this trial knowing we have some time to search for the "next thing".
Thank you for your prayers for a clinical trial. Please keep praying for another trial and pray that God will lead us, preserve life and glorify himself in the process. May we continue to live faithful in spite of this long lingering disease.
With love. XOXO
Monday, August 1, 2016
I'm not well...
Some of you know I started this clinical trial strong, but have rapidly gone down hill the last 5-6 days. By Saturday night my abdominal pain was almost enough to take me to the ER. Years ago I would have gone, but now I'm hard set against going to the hospital. I've spent enough time there. In the night I developed sores all over my scalp and that has turned into other sores, plus rash. It's not itchy. It's actually just painful. Along with my other long list of symptoms (heavy pressure behind my eyes, GI problems, nausea/vomiting, extreme fatigue, headaches, cough, body aches) the sores and abdominal pain meant we stopped taking the trial meds Sunday. I've been at highlands oncology today getting checked out and getting IV Meds, vitamins and potassium. Hopefully this will help flush my system and get me feeling good enough to start eating and drinking more. I'll see my main doctor on Wednesday to determine next steps. I was supposed to have a biopsy tomorrow and spend the day here getting blood draws Wednesday, but that will all be on hold now.
On one hand we feel like God orchestrated this trial for me here, but not with these type of side effects. I am at peace that this looks like a door being closed. Billy and I know that only God can author this story of ours. It's a story with so many twists and turns we can never guess the ending! But we know he is good. 🙏🏼💜
Saturday, July 23, 2016
Tuesday, July 19, 2016
God...Can We Talk?
Sometimes the heaviness of life can become overwhelming, don't you think?
In a matter of seconds I can think of heavy burdens facing individuals, families, marriages, parents, friendships, states, churches, pastors, communities, our nation...our world! We live in a time where the communication of others' burdens can be in our minds and hearts within minutes. Technology has transformed our lives so that we never have an excuse to be out of touch with the on goings around us unless we choose to "sign off". In which, many times, we feel the need to announce that we are going to purposely be "out of touch".
I love technology (or I couldn't write to you now), but don't you also tend to get bogged down with the heaviness of "being in the know"?
Last week, in my little circle of the world, there were so many things to be burdened with that I became a bit sad and numb. Then anxious. Then angry and back to sad. I hit a wall. I couldn't pray. I couldn't read my bible. The burden literally felt like it was adding to the weight of my body.
One night I laid in bed and out of sheer discipline I opened my bible. It was already close to midnight, but I needed to talk to God. Not just a one way conversation, but a real talk. I needed to hear from Him. For whatever reason I opened my bible (yes I still use a real paper bible) to the tiny book of Habakkuk. I read the first chapter and right away underlined Habakkuk's complaint, "How long, O Lord, must I call for help?" Okay, I thought. I can relate to this. It went on, "Wherever I look, I see destruction and violence. The law has become paralyzed. The wicked far outnumber the righteous." Hmmmm. So maybe we are going to focus on the political and civil burdens tonight. That's good. I should be satisfied with that, I thought. But, I wasn't, so I read on.
"For [look around] I am doing something in YOUR OWN DAY, something you wouldn't believe even if someone told you about it." Wow, here's a word from God. He's reminding me he is unfathomable, unexplainable and indescribable! I like that reminder, I thought, but what are you DOING God?
I read on and chapter 2 told me that we must wait patiently and faithfully on the one true God, not falling into temptation of other God's such as pride or wealth, physical beauty or want/greed. Okay, God, I hear you and I want you to help me live righteous and faithful. I am a sinner and I need your help. But, by your grace, this isn't really what's troubling me God. I need to talk to you about the hurts in life God. There was only one more chapter to finish the book and it was getting late, but I read on. I asked, will you speak to my heart God?
Chapter 3 is a prayer that Habakkuk sung as he knew God was going to discipline Judah and the evil there. It begins with praise and awe for the one true God. He asks, "In this time of our deep need, help us again as you did in years gone by." I whisper, thank you for your faithfulness in all these burdened situations God. Habakkuk goes on to describe God's coming with rays of light flashing from his hands where his power is hidden! Wow...that is super cool! God has hidden power? God marches across the land in anger and power causing terror and distress, destroying all things evil. Whoa....this is what needs to happen right now in this world, I think. As Habakkuk saw this in a dream he says this. "My lips quiver in fear. My legs gave way beneath me, and I shook in terror. Yet, I will wait quietly for the coming day when disaster will strike the people who invade us.
Habakkuk has peace, even knowing that hard days are ahead. God, I want the gift of peace please.
"Even though the fig trees have no blossom and there are no grapes on the vines, even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, YET, I WILL rejoice in the Lord! I WILL be joyful in the God of my salvation! The Sovereign Lord IS MY STRENGTH! He makes me as surefooted as a deer able to tread upon the heights."
Wow God! Talk about waiting until the very last few verses to pierce my heart! So, even though there was turmoil, evil, famine, disease, false Gods and lost control in government, Habakkuk found joy and strength and peace in the one true God. Our Lord Almighty. The One who is, always has been and always will be! Our redeemer, Savior, strong tower, refuge, protector and friend. No matter how things "appear", GOD IS DOING SOMETHING in our own day! When everything around us is unsteady, we can count on God to be steady inside of us.
Thanks for the talk God.
*Habakkuk Chapters 1-3 NLT
In a matter of seconds I can think of heavy burdens facing individuals, families, marriages, parents, friendships, states, churches, pastors, communities, our nation...our world! We live in a time where the communication of others' burdens can be in our minds and hearts within minutes. Technology has transformed our lives so that we never have an excuse to be out of touch with the on goings around us unless we choose to "sign off". In which, many times, we feel the need to announce that we are going to purposely be "out of touch".
I love technology (or I couldn't write to you now), but don't you also tend to get bogged down with the heaviness of "being in the know"?
Last week, in my little circle of the world, there were so many things to be burdened with that I became a bit sad and numb. Then anxious. Then angry and back to sad. I hit a wall. I couldn't pray. I couldn't read my bible. The burden literally felt like it was adding to the weight of my body.
One night I laid in bed and out of sheer discipline I opened my bible. It was already close to midnight, but I needed to talk to God. Not just a one way conversation, but a real talk. I needed to hear from Him. For whatever reason I opened my bible (yes I still use a real paper bible) to the tiny book of Habakkuk. I read the first chapter and right away underlined Habakkuk's complaint, "How long, O Lord, must I call for help?" Okay, I thought. I can relate to this. It went on, "Wherever I look, I see destruction and violence. The law has become paralyzed. The wicked far outnumber the righteous." Hmmmm. So maybe we are going to focus on the political and civil burdens tonight. That's good. I should be satisfied with that, I thought. But, I wasn't, so I read on.
"For [look around] I am doing something in YOUR OWN DAY, something you wouldn't believe even if someone told you about it." Wow, here's a word from God. He's reminding me he is unfathomable, unexplainable and indescribable! I like that reminder, I thought, but what are you DOING God?
I read on and chapter 2 told me that we must wait patiently and faithfully on the one true God, not falling into temptation of other God's such as pride or wealth, physical beauty or want/greed. Okay, God, I hear you and I want you to help me live righteous and faithful. I am a sinner and I need your help. But, by your grace, this isn't really what's troubling me God. I need to talk to you about the hurts in life God. There was only one more chapter to finish the book and it was getting late, but I read on. I asked, will you speak to my heart God?
Chapter 3 is a prayer that Habakkuk sung as he knew God was going to discipline Judah and the evil there. It begins with praise and awe for the one true God. He asks, "In this time of our deep need, help us again as you did in years gone by." I whisper, thank you for your faithfulness in all these burdened situations God. Habakkuk goes on to describe God's coming with rays of light flashing from his hands where his power is hidden! Wow...that is super cool! God has hidden power? God marches across the land in anger and power causing terror and distress, destroying all things evil. Whoa....this is what needs to happen right now in this world, I think. As Habakkuk saw this in a dream he says this. "My lips quiver in fear. My legs gave way beneath me, and I shook in terror. Yet, I will wait quietly for the coming day when disaster will strike the people who invade us.
Habakkuk has peace, even knowing that hard days are ahead. God, I want the gift of peace please.
"Even though the fig trees have no blossom and there are no grapes on the vines, even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, YET, I WILL rejoice in the Lord! I WILL be joyful in the God of my salvation! The Sovereign Lord IS MY STRENGTH! He makes me as surefooted as a deer able to tread upon the heights."
Wow God! Talk about waiting until the very last few verses to pierce my heart! So, even though there was turmoil, evil, famine, disease, false Gods and lost control in government, Habakkuk found joy and strength and peace in the one true God. Our Lord Almighty. The One who is, always has been and always will be! Our redeemer, Savior, strong tower, refuge, protector and friend. No matter how things "appear", GOD IS DOING SOMETHING in our own day! When everything around us is unsteady, we can count on God to be steady inside of us.
Thanks for the talk God.
*Habakkuk Chapters 1-3 NLT
Thursday, June 30, 2016
Clinical trial consent signed!
After having about 35 pages READ to us we SIGNED CONSENT for a clinical trial!
After fasting all day no blood draw was required after all! Ha! Gotta roll with it or it will make us crazy! Thankful to have my spot and be on the road to get our boy from camp! Thx for prayers!!!!!!
Trial update
When it's a BIG BIG DAY and your phone shows the doctor is calling an hour before your appointment......it is nerve racking!
Thank goodness they still plan to sign me today for the clinical trial, but they won't be ready until this afternoon around 2:15 now. Luckily they caught me before I ate something as she said I need to be fasting! (Good to know!)
....and now they called again to say it will actually be 3:00 before they can see me and to eat something light right now and then start fasting! Okay, breakfast sounds good!
This is the life of cancer treatment and I'm sure any long term medical condition. Our life and schedule once again becomes dictated by the doctors and facility schedules.
My sister's friend is all ready to watch Katy & I's three little kids and the kids are looking forward to it. My sister planned her morning to go with me. And now, I impact their lives as well with one little phone call. Plus, we were leaving town at 2:30 today to drive to Colorado and pick up our son from camp in Estes park. He needs picked up by 6 pm tomorrow night. What a quick reminder of what is to come. What life is like on treatment.
I'm thankful to have a treatment, but honestly dread the interruption to life again. May my eyes be open to see what God is teaching me through this lack of control once again.
Thank God with us that the trial is still happening! Pray that they will really be ready to sign me at 3:00 so we can still easily get to camp and pick up our son on time! Pray that all testing and pre-req goes smooth and that ultimately God will allow this trial to give me more active life with my friends and family!
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