People say waiting on a woman is difficult, but try waiting on a doctor!
I've become very skilled in the process of waiting.
Finally get an appointment....then wait and wait for the date to arrive.
Hurry up to the appointment.....then sit and wait while they are only "30 minutes to 1 hour" behind.
Get all those follow up tests and scans done.....then wait for the doctor to review them.
Right now....I wait by the phone. Wait for a clinical trial to become available. Wait for a status update on immunotherapy. Wait to learn if another institution will see me.
Good thing my doctor is a man or I'd be in double trouble, right?!?
Seriously though, this seems to be taking forever. I did get a call last Wednesday night from my doctor in Houston. He said that there are currently no clinical trials available to me in the next 3-4 months and there is nothing on the Horizon at this point either. That April appointment they offered will be a good time to review the trial options again, I guess.
In the mean time, my doctor is following up on one more option for Immunotherapy and I'm hoping to hear back from him tonight or tomorrow. If Immunotherapy isn't an option my local doctor, my Houston doctor and I will have a consultation about next steps. The local KRAS trail sounds promising, but it may not begin for another 9-10 weeks. Again, I wait to hear a firm start date from the doctor.
Currently, I'm looking for clinical trials elsewhere. With this being such a rare gyn cancer and it being metastatic it is rather difficult to know which trials I really qualify for, but we pray God will lead us to the right thing at the right time.
If something doesn't show up by the end of the month, I will most likely have to begin a new regimen of chemotherapy with the hopes to hold off any new growth and potentially shrink the cancer while we "wait" for a clinical trial to open up.
I'm learning the timing for all of these things is pretty important because there is a 30 day wash out period before a clinical trial. This means all other treatment stops for 30 days to make sure my system is clean to begin the trial.
I know that God's timing has always proven perfect.
I know that God sees the road ahead and his plan for me is perfect.
I know that I don't spend one minute "waiting" alone. The way Jesus waits with me is perfect.
I know that through this God is still perfecting me.
God's way is perfect. All the LORD's promises prove true. He is a shield for all who look to him for protection. Psalms 18:30
God is my strong fortress, and he makes my way perfect. 2 Samuel 22:33
And surely I am with you always, to the very end of the age. Matthew 28:20b
Jehovah will perfect that which concerneth me: Thy lovingkindness, O Jehovah, endureth for ever; Forsake not the works of thine own hands. Psalms 138:8
Wednesday, February 10, 2016
Wednesday, January 27, 2016
Make My Heart Believe
2016's first trip to MD Anderson was a painful reminder of how our human will doesn't always align with the sovereign will of our Heavenly Father.
I never felt at ease about getting miraculous results, but I willed myself to believe that it was possible...again....this time. I'm sure you've had a situation where you prayed, but never felt the sense of peace and relief that can come with it. I had convinced myself that it was fear creeping into my mind because of so many others battling health issues and getting bad news. They are good people. They pray and believe God can answer their prayers too.
My scans showed that there is no new signs of cancer anywhere in the body and most of the metastatic cancer nodes in my lungs had not grown either! This is the fantastic news that we remind ourselves to be grateful for. Yet, two lung spots did grow and one even doubled in size in the last 3 months. The spots are tiny so that the largest is still only 1.5 cm large, but our will, our prayer, was that these spots were dead, and they are definitely not. The chemo didn't hold off growth as long as we had hoped so now we are searching for a clinical trial once again; all knowing there is still no cure for the KRAS gene mutation in which I carry.
I cried in the doctor's office when thinking about telling my kids this news. There would be more cancer to fight, not only in my future, but my kids future. I loathe the idea that they will remember childhood as a time when mom fought cancer. I know, your instinct will want to encourage me, reminding me how my children are learning about the Lord through this battle. This is true. They are wiser and have a deeper faith and relationship with God than I did at their age and for that I am so thankful. I have a deeper relationship than I ever knew possible. I realize how much my husband loves me and is committed to our marriage and our family. My family has grown closer, we are more authentic friends, more authentic, gracious and empathetic people. For all these things I am thankful. Yet, I grieve that we are still facing more cancer so soon. I grieve that we watch a movie where a parent dies and we all cry and snuggle a little closer hoping that isn't us someday.
In the midst of it all I'm re-reading a book I was given back in 2010 after my first diagnosis with Vaginal Adenocarcinoma. The book is called Psalm 91 God's Umbrella of Protection by Peggy Joyce Ruth. I'm reminded that I serve a God that had made a way for us in every circumstance. He covers our external and internal fears for ourselves and our family with his protection and love. God knew there would be many kinds of hurts in this life and speaks to each one so personally.
Therefore, I will not be afraid of the pestilence that stalks in the darkness. My God offers protection for my family as well, not just for myself. May He continue to mold me until my will matches His.
As the praise song says, I pray, "In all my sorrows, Jesus is better - make my heart believe."
I never felt at ease about getting miraculous results, but I willed myself to believe that it was possible...again....this time. I'm sure you've had a situation where you prayed, but never felt the sense of peace and relief that can come with it. I had convinced myself that it was fear creeping into my mind because of so many others battling health issues and getting bad news. They are good people. They pray and believe God can answer their prayers too.
My scans showed that there is no new signs of cancer anywhere in the body and most of the metastatic cancer nodes in my lungs had not grown either! This is the fantastic news that we remind ourselves to be grateful for. Yet, two lung spots did grow and one even doubled in size in the last 3 months. The spots are tiny so that the largest is still only 1.5 cm large, but our will, our prayer, was that these spots were dead, and they are definitely not. The chemo didn't hold off growth as long as we had hoped so now we are searching for a clinical trial once again; all knowing there is still no cure for the KRAS gene mutation in which I carry.
I cried in the doctor's office when thinking about telling my kids this news. There would be more cancer to fight, not only in my future, but my kids future. I loathe the idea that they will remember childhood as a time when mom fought cancer. I know, your instinct will want to encourage me, reminding me how my children are learning about the Lord through this battle. This is true. They are wiser and have a deeper faith and relationship with God than I did at their age and for that I am so thankful. I have a deeper relationship than I ever knew possible. I realize how much my husband loves me and is committed to our marriage and our family. My family has grown closer, we are more authentic friends, more authentic, gracious and empathetic people. For all these things I am thankful. Yet, I grieve that we are still facing more cancer so soon. I grieve that we watch a movie where a parent dies and we all cry and snuggle a little closer hoping that isn't us someday.
In the midst of it all I'm re-reading a book I was given back in 2010 after my first diagnosis with Vaginal Adenocarcinoma. The book is called Psalm 91 God's Umbrella of Protection by Peggy Joyce Ruth. I'm reminded that I serve a God that had made a way for us in every circumstance. He covers our external and internal fears for ourselves and our family with his protection and love. God knew there would be many kinds of hurts in this life and speaks to each one so personally.
Therefore, I will not be afraid of the pestilence that stalks in the darkness. My God offers protection for my family as well, not just for myself. May He continue to mold me until my will matches His.
As the praise song says, I pray, "In all my sorrows, Jesus is better - make my heart believe."
Wednesday, January 6, 2016
Help with Medical Bills and Travel Expense
I just want to say a HUMONGOUS thank you to those of you that are continuing to give toward our medical expenses. When this site was set up by friends in 2013 we had NO IDEA that we would still be battling cancer.
I've now had scans and doctor check ups every 3 months since 2010. Along with the chemotherapy, radiation, brachy therapy, major surgeries, and lifelong medical supplies used daily, it has been a very expensive journey.
We are so incredibly blown away by the generosity of everyone. Many anonymous so we don't even know who to thank. Although we can never repay you financially, we will pass it on when we get the opportunity to love on someone else. We will pray for you and your families. We want you to know how encouraged we are because of your selfless and generous love toward us.
"May the Lord bless you and protect you.
May the Lord smile on you and be gracious to you.
May the Lord show you favor and give you his peace."
Numbers 6:24-26 NLT
"Give, and it will be given to you. They will pour into your lap a good measure—pressed down, shaken together, and running over. For by your standard of measure it will be measured to you in return.”
Luke 6:38 NASB
"Look, I am coming soon! My reward is with me, and I will give to each person according to what they have done."
Revelations 22:12 NIV
Thank you for living this out with us.
https://www.gofundme.com/qxw2o
I've now had scans and doctor check ups every 3 months since 2010. Along with the chemotherapy, radiation, brachy therapy, major surgeries, and lifelong medical supplies used daily, it has been a very expensive journey.
We are so incredibly blown away by the generosity of everyone. Many anonymous so we don't even know who to thank. Although we can never repay you financially, we will pass it on when we get the opportunity to love on someone else. We will pray for you and your families. We want you to know how encouraged we are because of your selfless and generous love toward us.
"May the Lord bless you and protect you.
May the Lord smile on you and be gracious to you.
May the Lord show you favor and give you his peace."
Numbers 6:24-26 NLT
"Give, and it will be given to you. They will pour into your lap a good measure—pressed down, shaken together, and running over. For by your standard of measure it will be measured to you in return.”
Luke 6:38 NASB
"Look, I am coming soon! My reward is with me, and I will give to each person according to what they have done."
Revelations 22:12 NIV
Thank you for living this out with us.
https://www.gofundme.com/qxw2o
Next Scans - January 12th
Many people have asked when I'm going to be in Houston. Billy & I will drive down next Monday, 1/11. Scans are Tuesday and I will get results on Wednesday, 1/13.
We continue to feel blessed by so many of you still following our journey and cheering us on. Some days I feel so good I forget the heavy diagnosis I carry. Other days it weighs too much for me to carry alone. But thankfully, I never walk alone. Jesus picks up that burden and holds it up high to take the weigh...t of it away. How people walk through the daily trials of this life without knowing God...I do not know. I would not manage well on my own in so many circumstances.
We continue to feel blessed by so many of you still following our journey and cheering us on. Some days I feel so good I forget the heavy diagnosis I carry. Other days it weighs too much for me to carry alone. But thankfully, I never walk alone. Jesus picks up that burden and holds it up high to take the weigh...t of it away. How people walk through the daily trials of this life without knowing God...I do not know. I would not manage well on my own in so many circumstances.
May the Lord be praised! Day after day He bears our burdens; God is our salvation. Selah
Psalms 68:19 HCS
Great is his faithfulness; his mercies begin afresh each morning.
Lamentations 3:23 NLT
Psalms 68:19 HCS
Great is his faithfulness; his mercies begin afresh each morning.
Lamentations 3:23 NLT
A New Year
After a wonderful December celebrating and looking forward to Christmas, I find my mind now wandering toward January. It wasn't always this way, but now January means more scans, appointments and another trip to Houston. New deductibles to be paid. New results that direct the next 3 months of my future. A new twelve months filled with unknowns for our family. Will I get a year without facing more treatment? Will we get to buy a house of our own this year? Will I even live for another full year?
I don't mean to sound so downhearted; just honest. My head remembers the path to hope and peace, courage and joy, yet sometimes sweat and tears are required for my heart to catch up. Eventually my soul will join the two and then....I find laughter and smiles, hugs and contentment once again.
Please be in prayer for scans that are stable with no treatment necessary.
Please be in prayer for scans that are stable with no treatment necessary.
Thursday, December 10, 2015
Making the Most of This Time
Ephesians 5:16 reminds us to make the most of our time because tomorrow is evil!
I've put my wig away in a box and been busy seizing the day!
I feel SO much better with my blood counts pretty close to normal. I've been gathering with family and friends, attending Christmas parades and parties, even a spontaneous fishing adventure in Oklahoma. Isaiah has entertained us with lots of football and basketball. Alyssa keeps us running with cheer and tumbling.
I am grateful for these moments that will outlive what tomorrow could bring.
May you seize the day in some big or small way today as well!
Thursday, November 5, 2015
Patience is a virtue!
One thing I've been told over and over in my cancer journey is to be patient with myself. That rest heals the body. Healing takes time. Energy doesn't return overnight. I pass this advice on to others because it has helped me. It helps me to give myself permission to rest, to say no, to ask for help.
Once off chemo about two weeks, I traveled to NW Colorado for my grandpa's funeral. Grandpa was 89 years old and had such a wonderful military ceremony surrounded by the mountains and colors of Fall. It was a gift to be able to travel and be there for a week. I returned home very fatigued and slept for a couple days, but the energy did not return. I ended up in the hospital for a partial bowel blockage and an infection. After being in the hospital for 2 nights I returned home thinking I'd go back to how I was feeling in Colorado. Wrong! It took me a full week to feel like I could quit sleeping 18 hours a day. Thank goodness it was just in time for my son's 8th grade football game and all the Halloween madness. I got so excited to participate again that I ended up in bed sleeping it off....again.
Patience is a virtue!
We've all heard this saying, but what does it really mean?
I think it's used here as an idiom. I know this only because my 4th grade daughter is learning about these at school right now. Hence, I am learning to be as smart as a 4th grader as well! With my newfound knowledge I quickly googled this and this idiom means......to make a virtue of necessity, to make the best of a difficult or unsatisfactory situation.
That seems to be a perfect fit.
To me, the lack of energy is definitely an unsatisfactory situation. So....today I'm praying that I can make patience a virtue out of necessity, but also that my energy will be the lasting type...real soon!
Once off chemo about two weeks, I traveled to NW Colorado for my grandpa's funeral. Grandpa was 89 years old and had such a wonderful military ceremony surrounded by the mountains and colors of Fall. It was a gift to be able to travel and be there for a week. I returned home very fatigued and slept for a couple days, but the energy did not return. I ended up in the hospital for a partial bowel blockage and an infection. After being in the hospital for 2 nights I returned home thinking I'd go back to how I was feeling in Colorado. Wrong! It took me a full week to feel like I could quit sleeping 18 hours a day. Thank goodness it was just in time for my son's 8th grade football game and all the Halloween madness. I got so excited to participate again that I ended up in bed sleeping it off....again.
Patience is a virtue!
We've all heard this saying, but what does it really mean?
I think it's used here as an idiom. I know this only because my 4th grade daughter is learning about these at school right now. Hence, I am learning to be as smart as a 4th grader as well! With my newfound knowledge I quickly googled this and this idiom means......to make a virtue of necessity, to make the best of a difficult or unsatisfactory situation.
That seems to be a perfect fit.
To me, the lack of energy is definitely an unsatisfactory situation. So....today I'm praying that I can make patience a virtue out of necessity, but also that my energy will be the lasting type...real soon!
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