Grateful amongst the trials

I feel so grateful. Thank you to all of you for praying and cheering us on. This battle gets long and wearisome, but there’s so much encouragement through your prayers and messages, notes, gifts, flowers, food and financially (Don’t even get me started on that). Everyone has been beyond generous and Billy & I are once again humbled and grateful. 

Prayers answered - 

My kidney function is good enough to still do the trial. 

God has allowed me a better, more productive week before we leave. 

We have children who are bravely walking through this with us. 

God sent helpers along the way to cover things while we’re gone and to keep things moving on our new event center /wedding venue build that’s in process. 

My husband. He is willing to step in to any circumstance with me and not make me feel like a burden or anything less than I always have been. 

The list could go on. 

Details as we know it. 

Monday, 11th - Go to OKC and have a picc line out in. I’m still pouting they won’t do a new port, but a picc is better than being poked repeatedly for an IV. 

Tuesday - as long as infection seems gone, we report to the infusion lab at 8 am.  They’ll do blood work, premeds, 2 chemos and fluids. 

April 18th the next Tuesday they will perform the Tcell transplant. 

I will stay at a nearby hotel until they deem it necessary to go to the hospital to manage the symptoms from chemo. 

Cancer is big, God is bigger. 

Road blocks or just speed bumps?

This has been an interesting week. I’ve gotten a little stronger this week, which helps my spirits, but I have to fight for it and be very intentional about my eating and drinking and make sure they fuel my body. 

We went to OKC yesterday for pre trial scans and testing. My legs are weak and my back pain is not good (which we learned the back tumor has grown) , so I opted for a wheelchair. When going to see Dr Asch I needed to look strong enough to do this trial so I put on make up and fixed my hair and ditched the wheelchair in his building. It worked. He said I physically  look great and able to do it, but they needed to push back the start date to April 11 to give this infection another week to clear. 

Today Dr Asch called and said that my kidney function isn’t good right now and so I will go back to repeat some tests next Wednesday. He said they have to improve in order to do this trial. 

I’d love for everyone to pray these things.

Good kidney function by Wednesday

Safe travels on these road trips back and forth to okc so often

That Billy, myself and our family will be able to stay strong and full of hope 

My body to continue’s to get stronger. 

Thanks for walking this with us. We are holding tight to God and choosing to trust his plan in the unknown. 

He who dwells in the shelter of the most high, will abide in the shadow of the almighty. I will say to the Lord, my refuge, my fortress, my God, in whom I trust. 

•Psalms 91:1-2

Third Time’s a Charm

They say the third time’s a charm, and I’m praying they’re right! Just got home from my third stay in the hospital this year. I was feeling really good last week, finished my anti fungal med on Wednesday and by Friday I had fever and noticeable infection in my nephrostomy tube/bag coming from my kidney. Saturday the nurse told me to go to the ER where they admitted me. With all my symptoms including low blood pressure (82/59) and high resting heart rate (118) the doctor felt I needed to stay and be watched on certain meds while we waited to see what the cultures grew. Waiting on a culture to grow is like watching paint dry when you’re in the hospital! They decided to take out my nephrostomy and put a new one in, just in case infection was holding in to that. Put me on some new antibiotics for 21 days and sent me home today! 

All this just brings us to the prayer request. I will start my clinical trial treatment sometime between 3/14-3/20 and I can’t start if there is any infection in my body. Please pray this time  we kill off all infection easily and quickly! It’s been such a stubborn infection so far. 

Thanks prayer warriors. 💜✝️

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.