Just taking the next step

Monday’s appointment was pretty overwhelming. We met with the Doctor sponsoring the TILS clinical trial. He says it is a very attractive idea to put me in it and see how I do. They have some people in remission 1-2 years on this trial, so they’d like to see how my cancer type responds. It feels high risk, high reward to me. It could be something that brings remission, but the side effects from the medications will most likely put me in ICU. They said for sure I’ll be in the hospital about 2 weeks. Things can happen like internal bleeding, infections, extremely low blood pressure, and even a coma. They have protocol in place to handle all of the side effect possibilities, but I can’t say that the details didn’t make me feel a bit afraid. I think being naive to suffering would be good at a time like this, but I’m too familiar and that causes dread also. I’m just asking God to slam the door shut if this is not His will for me. So far I’m passing through all the prerequisite testing quickly. The trial coordinator actually said she’s never seen a trial move this quickly. 

Billy & I are back on the road to OKC again today, which for those of you not familiar, it is a 422 mile round trip. They need more prerequisite testing and new CT scans. We’ll travel back home after scans tomorrow and then come back next Tuesday when they will remove a tumor in my leg to use for the trial.

It feels like a lot. I started reading scripture about trust and It helped me find  my footing. I’ll share a few in case you need them too! 

 With God’s help, strength and direction we will face this “next thing”! So humbled to have you walking it with us again. 💜

In the hospital again.

Last week I began going downhill again and by Thursday went to see a doctor and ask to get fluids. They admitted me to the hospital for the same symptoms I had in January. Resting heart rate of 141, severely dehydrated (which my adrenal insufficiency can cause), blood pressure was 78/56, etc. 

It appears that there is a bacteria infection, but they also believe I have a fungus that has gotten in my blood stream. They’ve been treating me according to the fungus that I get in January and someone missed it and didn’t treat me for it. That’s is a very frustrating thought as maybe we could have avoided this time. 

I hope to go home tomorrow because I have an appointment in Oklahoma City on Monday at 11:30 to meet with the doctor over the clinical trial and do a lot of pre testing the trial requires. I feel hopeful about this trial and now that they are treating me with the right meds I can go into it stronger. 

I’m so thankful for all my helpers. So many more than pictured. 

Is it your will God?

Yesterday I felt so sick and I was just talking to God about it continuously. As I have a drain from my kidney and still await a stint to be put in, I suffer mostly with this fistula, which is a hole between my stomach and colon. This can hurt and  make me feel very sick (think nausea, vomiting, cramping, aching).  I’m going to meet with an OU research doctor in OKC about a clinical trial and will also talk to her about this fistula. We need wisdom on trying to surgically repair before the trial or not. I’m still hoping the surgeon from OU will see me also. If he’s willing to repair it, I’m willing to let him. Although in May he said he’s never going back in my abdomen again. I’ll try to win him over. 

I still believe God can heal me. It’s really a question of, if He will. When we have something really hard in our life we try to understand pros and cons, but God sees a bigger picture. One that includes things we can’t understand. If we could, God wouldn’t be God. I wrestle with this just like anyone else, but feel God is giving me peace in the waiting. I’m not afraid to die, but I am afraid to not fully live.  My heart is full of so many ideas and plans, yet physically my body can’t keep up. The stubborn independence I once knew has to be grieved as I count on so many others for help and support. This is a good thing, whether I like it or not, as I am blessed on so many ways by all those around me. God is present in the big and small things. When I try to figure it out in my own it’s roadblock after roadblock, but God’s timing is perfect. I still trust Him. I trust that He knows my heart. I trust that He knows the future and will never leave me, but instead will strengthen me and uphold me with his strong right hand! (Is. 41:10b)

I’m still asking God to allow me to see all my kids grown and married with babies. I picture Billy and I rocking on the front porch with full heads of gray hair!  So far, my life is a miracle. I’m well past defying the odds of this cancer, according to the doctors and statistics. I know God is still in it and  I’m claiming this verse for dreams of the future.  

Isaiah 46:4 “Even to your old age I am he, and to gray hairs I will carry you. I have made, and I will bear; I will carry and will save.”

What do you need to trust God for today? 

Waiting in a grab & go culture

Last week I became more and more sick and by Monday we went to the doctor and for a variety of reasons they said I needed to be admitted to the hospital. They said, don’t go home, don’t collect $200, just go straight there. 

My resting heart rate was 147, low blood pressure, vomiting brown stuff, severe fatigue, etc. 

They got to work on me so fast when I arrived, but then we started waiting. These fevers I’ve had for a couple months could very well be related to my kidneys being full of infection and not allowing everything to pass through the body as it should. Mind you, we’ve been on tons of antibiotics since mid November trying to kill “an infection” somewhere. Wednesday interventional urology performed a CT guided procedure to insert a drain to my left kidney. They sent this to be cultured and learn what is the right medicine.  … waiting ... today they took a CT to see if I’ve developed a partial block in my colon. No results yet … waiting …

Tuesday I was supposed to be in OKC to discuss a clinical trial. Now we don’t even know when we can reschedule with this turn of events…waiting…once we figure out the infection and what to do about it (to avoid getting cdif by throwing wrong antibiotics at it), then I may find out when they will put a stent into my ureter to help hold it open for clear passage while infection finishes clearing. And this will tell us when we can reschedule the clinical trial appt. …waiting…

We aren’t accustomed to waiting in this culture. Everything we want to have can be in our doorstep in a matter of days. What we want to eat can arrive in less than 20 minutes. Information lives in the phone we have on us at all times. We order items online so we don’t have to wait to check out at the store. We live in a grab & go culture, but yet many times God asks us to wait. To be still even, while we wait. 

I don’t understand the timing of any of this and why it has to take so long, but I do know who is behind the scenes at work. In that I find rest and peace from my hospital bed.

Not overcome completely.

I feel God is asking me repeatedly to come to the end of myself. When you have no more ideas or plans. No ideas on how to “fix it”, but desperate for help. That’s when we come to the end of ourself. Surrendering the unknown to a God that always knows. 

Yesterday my local oncologist said he thinks this cyst on the back of my leg is metastatic cancer. He didn’t have any helpful ideas for my leg pain, which is caused from years of using high dose prednisone. It’s called avascular necrosis. The dr told me I can get a cane or have hip replacement. Neither options I like, of course. 

I find myself asking God what his plans are allowing yet another painful condition into my life. God is being pretty silent with me right now, so I’m just waiting. 

These verses were on my social feed a week ago and spoke to my soul. 

May I not be overcome by my circumstances, but rest in the fact that You have overcome the world. 🙏🏻

Reality?

This picture makes me think of how social media so often portrays only the good side of our lives. If I only posted this pic with no commentary, you’d think I feel great and am busy living life! In reality, I took a 2 hour rest in order to have enough energy to spend 45 minutes putting myself together for family photos.  The photos were being taken at the end of the driveway, but Chris walked me to the truck so that Billy could drive me down there. We spent 15-20 minutes doing various photos and then in the truck I went to go back to the couch. 

I am so grateful to be with family who cares for me, are patient with me and are being attentive to how I feel or what I need. This has allowed me to get away for Christmas in Colorado and enjoy new scenery and quality time. Good for my spirit! 

One week ago I finished my 5 doses of double radiation, which just means they radiated two places, but individually back to back. I’ve been fighting pain, fatigue, nausea, fever and weakness. This morning I woke in pain and had 102.7 temp. I’m on a 2nd round of antibiotics so this fever is a mystery. Have you ever had fever solely because of intense pain? It comes and goes randomly. 

I’ll have a couple weeks to recover from radiation, plus Monday Jan 2nd I will do my 2nd dose of Avastin in the infusion room. 

Please be praying that Avastin and this radiation stops all new growth and shrinks current tumors. 

Pray for my travels home and my pain. 

Pray my fever goes away and there is no infection. 

Lastly, there is a clinical trial that my tissue has the marker for, but we don’t know if there is room for me. Please pray over this as my local oncologist has referred me and I’ll get an update next week. 🙏🏻

Sorry for the late update. I just haven’t had the focus or energy to even be on electronics. 

Merry Christmas and God bless!🌠

Rock Solid Love & Devotion

I just found this pic on my phone. Billy must have taken it last week when I started treatment with Avastin. It’s been a rocky week as how bad I felt going into treatment and radiation is just piled upon. This man who I’ve gotten to call my husband over 25 years is standing rock solid is his care and concern for me. We are not in denial to the serious situation we face, but together we choose to still seek God for hope. I watch Billy taking care of everything and it’s so evident that God is His strength right now. Nothing is more attractive. He’s humble, sad, encouraging and gentle; pointing us all to God to help us in whatever comes. I feel like God is asking us to come to the end of ourselves. That doesn’t mean don’t hope and pray for healing. For me right now, it means being at peace with God’s story… His will for our lives, yet still living and planning for a future! Why? Because at some point our human mind can’t understand or see how the story works out, but God’s ways are so much higher than ours. We aren’t supposed to be able to comprehend God size plans. 

Thank you Billy for being a steadfast rock in my life right now, once again. We are both better people because of our trials, but we are weary too. 

Pray for Billy as he Carries the load of our life. 

Pray for my body to receive the Avastin and iron and radiation for healing, but tolerate it in a way that is only a God thing next week on Christmas vacation. 

Pray for our kids to feel God’s comfort and strength as they navigate this with us, but live their own full beautiful lives as well. 

Pray away fever, infection, extreme fatigue and pain. 

3 more radiation treatments in Fayetteville next week. 

Thank you for walking with us!