cancer

Defense or Offense

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Psalm 23:4
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me;
Psalm 34:19
Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
Psalm 59:9
Because of his strength will I wait upon thee: for God is my defense.

Mom says she is waiting on God.
God is her defense. God is her offense too. The word of God is our sword. When we hear that the tests aren’t lining up with our faith yet…we don’t doubt our faith. We don’t doubt our God. We wonder why, we get frustrated, we may even cry a bit….but we never doubt God.
We pick ourselves up, go to the word of God — pick up our swords and fight again. We speak the word of God over and into this situation.
All I keep hearing is, “Do you trust me?” Yes. The answer is yes. I trust you God.

Psalm 7
O LORD my God, in thee do I put my trust.

Living

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Bob had doctors visit this week, started with a respiratory treatment to fight against a type of pneumonia that is common in post-transplant patients. Then we saw the nurse practitioner. He’s still doing very well…all things considered. Still very tired, energy level is increasing slowly but surely.

He even went to work this week.

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Although half of his time at work is napping…

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On our way home from his doctor visit Tuesday…I called mom to check on her. Couldn’t reach her, so I called dad. He said she had driven up to the office to visit! When we got to work she said, “I figured if Bob could get out and drive, so could I.”
I asked her how it felt to drive, she said,”It was a little scary. I haven’t driven in five months and I was a little nervous, but I made it!”

Both patients doing well. Driving. Working. Napping a lot. Living!

Tuesday…I think

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After being so acutely aware of what day it was, even following a calendar from day -3 to day + 18; it seems strange that I feel I’ve missed a few days and had to be told yesterday by Paula, “Kim, it’s Monday not Tuesday.”

Okay Shannon, here’s the update.

Saturday and Sunday we were at the hospital both days with mom. Fever, high white cells, high blasts (cancer cells), not feeling well, etc. The doctors were not entirely familiar with mom so they reacted appropriately and sent her through all the proper tests, and sent all of us through hell.

We haven’t left her and dad alone since the fevers on Saturday. We’ve gathered together around them every day and prayed for her. We’ve pleaded with God to take this cancer away. We’ve spoken to her body and anointed her with oil, telling cancer to leave. We’ve read aloud from the bible and sent the Word of God into her telling her body to line up with the promises that it contains. We’ve kept worship music streaming through the house and praised God in the midst of this storm. We keep telling God we trust Him….we trust Him.

We are trying to keep everyone else updated…but maybe we’re not doing so well at that. Mike summed it up, “Kim I know you don’t want to speak negatively, but can you tell me if this is bad news?” (or something to that affect). Here’s what struck me in that moment: how do I tell them that this is very serious and could be very bad news…and still keep my eyes focused on God and believe whole-heatedly for this miracle? How do I separate the nurse in me and the crazy-faith-miracle-believing woman? As an oncology nurse I keep listening to the numbers and percentages and projecting a prognosis….NO. I will trust God. He is above cancer. His word tells me to believe in Him.

Monday morning she had another blood draw at her doctors office. The lab tech drew blood and told us to wait for results. She came out to us wide-eyed and said, “You’re going to have to wait here until the doctor sees those results. My machine won’t count it…it’s really wacky…I think your white count is really, really high.”

We ask how high. 40ish.

We say, ” Better than this weekend, we’ll take it”. Then we wait for instruction from the doctor. Is he going to send us to the hospital? Is he going to want to change chemo? We wait, and we pray. The RN comes out and tells us this is very serious, lots of blast cells, high white count, but if she’s feeling okay go home and come see the doc Tuesday at ten. Ok, back home. Everyone comes over and we pray again. We praise God for good news and we pray. We thank God that cancer is leaving her body.

Mom gets a call. Her 94 year old aunt that lives in St. Louis is dying. Mom and dad are the care-takers, but they can’t go home to be with her. Mom cries the rest of the afternoon….we call Mike to go support Aunt Julie and pray with her.

Tuesday…see doctor. He says, “what the heck?”. He doesn’t have any definitive answers about what is going on in her blood. He asks how mom feels. She tells him that she’s much better than this weekend. He tells her to come back tomorrow, since the blood counts seem to be coming down we’ll draw again tomorrow and hope for better results.

So again we wait. We wait and pray for better results, we trust God. They’re coming.

Oh, and Bob (cancer free Bob) is still recovering. Slowly, ever so slowly but he’s recovering. For the past two days laying on mom’s couch recovering.

Hold on

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As soon as we take a deep breath and feel that we’re starting to see an end to this crap….hold on. It’s not over yet.

Dad called yesterday morning from the clinic. Mom was on day 6 of 7 of chemo, and she had a fever of 101. Dad was nervous, scared, wanted us to come. Paula and I went to the hospital to meet them. Mom didn’t look great. Very flushed, breathing rapidly, just not good. The nurse had talked to the on-call doc (remember mom’s doc is in Cancun), the on-call doc says to draw blood cultures, urine cultures and start chemo then send to the ER for evaluation. I know that God is in control, I know because it feels like no one else is. I will hold on to God.

After some pretty emotional conversation with the nurse…and then some pretty serious praying and anointing mom with oil….we left the infusion center for the ER. Mom went in a wheel chair. The ER doc starts with, “we think she’s in blast crisis” then says he’ll talk to the oncologist on-call and decide what to do. After a chest X-ray, a flu swab, some Tylenol, and a bag of fluids….we wait. Dad cried a bit, so did mom. We all did. But hold on……

Thank you God, we pulled ourselves out of the tailspin the doctors words had just put us into…we started speaking faith. Why do we have to believe what this doctor says? Why do we have to believe blood tests? Why can’t we believe what God says instead? We can! We can believe God. We were going to choose to believe God. Gods word is true. Gods word is true. Gods word is filled with promises for his children. We are his children. We will choose to believe him. Faith, rise up. We will claim his promise of healing. Mom be healed.  Hold on, it’s not over…

One small miracle…my cell phone rings and it’s our dear friend Pastor Marilyn. She called to pray. We put the phone on speaker (the phone that had no reception minutes ago) and we gathered around mom. Stan, Teresa, Paula, dad and I prayed with Marilyn. We laid our hands on moms body and spoke the word of God to her. Cancer be gone. We declared her healed, and we are believing God will heal her.

The doctor returned, “well that was encouraging…the oncologist says it may not be blast crisis because she has a lot of good white cells too…blast cells only about 20%. So he said if she had responsible family with her we could send her home. Come back tomorrow for blood draw, this may be a bad reaction to the transfusion she had Thursday. If counts are worse we have to admit her.”

Some call us responsible…we took her home. Aimie came over and read the bible aloud. We cried, we prayed, we laid our hands on her and prayed again. We are choosing to believe God and not man, God and not bad test results, good news not bad news. We encouraged each other with the word of God. Faith rise up!

I talked to Michele (oncology nurse cousin) she says by today it will declare itself. Yes….we declare her healed. So today total white blood cells down a bit, all else unchanged. Not in blast crisis. Stalled. We will take stalled…now we will pray again and call for healing. Cancer be gone. Go away. We rebuke you in the name of Jesus. Mom is a child of God. His promises won’t let go of her.

We will hold on to God.

Celebration

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When we received our wonderful news yesterday, we were also informed that Bob’s platelets were low and he’d need a transfusion. He’s still got some recovering to do. He asked, “How much longer before I start to feel like I have energy?” Could be as long as three months, but he should feel a little bit better every day.

Yesterday I was hoping he’d feel a lot better! I was hoping for a celebration! But….slow down a minute…Bob’s not up for a celebration yet.

The nurse at the infusion center asked how he felt, “Great! They just told me I don’t have cancer!”
“That’s awesome Bob! How are you going to celebrate?”
“I’m going to take a nap” and he reclined the chair and fell asleep. Then we came home and he slept and puked the rest of the evening. Yep….the celebration will have to wait a bit. Maybe we’ll hold off and celebrate with mom when she gets her good news.

Good News.
I have been expecting good news, I have been setting my eyes on the good, I have been telling God that I trust Him…so why was yesterday so shocking? I didn’t even know that they’d drawn the blood to test for the cancer. Dr. M and I had a discussion before the transplant and he’d said that we would wait for 90 days to see if the transplant had worked. He said, “Kim, don’t even think about results for 3 months,” so I wasn’t.

Yesterday Meghan said, “Well last time things went badly, and the news wasn’t so good…so we thought we’d just not tell you anything for 90 days…but this was good news. I knew you’d want to know.”

Yes. Last time Bob had a transplant we heard, “We’re so sorry, it didn’t work. It failed. But we can start experimental treatments…..”
Oh yes, I remember. That’s why the decision to go through this horrific experience again was such a hard one to make. You don’t forget someone telling you that you have failed transplant. I guess the same as you don’t forget someone telling you that the transplant was a success.

Yes, maybe the celebrating will come later. When mom gets her good news. When Bob feels alive. When I’ve mentally digested all of this.

I’m still a little numb. But…comfortably numb. (I know, I know…Pink Floyd again)

High

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High / Low for today? Nope. Today is just HIGH.

Yesterday I made a conscious decision to just say the good stuff. I had a talk with myself. I said, “Self!” (shout out to BAR there) “stop complaining, stop whining, stop acting like you have no faith! You are a child of God. He told you to just believe. He said He’d never leave you, and His promises are true.” I told myself to get out of the mud, stop wallowing in self pity and doubt, and that tiny bit of fear, and start acting like God loves me. Start acting like my FAITH tells me to. Walk by faith not by sight.

I get so caught up in the numbers, the test results, the physical symptoms, the exhaustion of it all….but wait! God doesn’t get exhausted. He doesn’t get tired. He doesn’t change. He is the rock on which I stand. So ‘self’…shut up and stand on that rock. So after having an attitude and faith adjustment…I feel better. Going to church last night helped too. Even though Bob didn’t last through it all.

Sooooo, even though the numbers aren’t what we are hanging on to, and we are walking by faith and not by blood tests, today I’m going to celebrate a blood test.

Saw the nurse practioner at clinic today. She said, “we drew cancer markers Tuesday…you wanna know results?” Told her no, we would wait awhile. We were not ready to talk about cancer yet…needed to recover from transplant…”thought Jeff told us we were not going to look at light chains until he was 90 days out?” I responded, a bit in shock. I haven’t even prepared to think about the results of this transplant yet….

“Well you’re gonna want to know these results, light chains 10. Bob, you don’t have cancer. The transplant worked!”

I’m still crying.

 

 

 

Two Patients

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I’m tired. I’m crabby. I’m sad. I’m a tiny bit afraid. Afraid of what? I don’t know. I do know that God did not give me a spirit of fear, so I need to get away from it.

Bob has moments of ‘life’, like today when he decided that he wanted to go to the grocery store on the way home from the clinic. This burst of energy was gone as quickly as it came and he had to use a grocery store scooter as he was too tired to walk through the store.

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After our quick trip to the store Bob’s dad came to sit with him so that I could go sit with mom. She had her chemo today and isn’t feeling so good. They had to give her IV fluids because her blood pressure was LOW…like 90/40 low. She never complains. She’s a rock star. She’s so strong, and so generous, and so much doesn’t want to put anyone else out….but she needs to be pampered right now. And if I have to drag Bob’s tired butt over there to sit on her couch all day, I will!

So I’d like to apologize to anyone who I’ve been rude to, calls that I haven’t answered, texts that I cannot reply to. Because I don’t have the energy to care about anything else right now. I’m sorry that I don’t care…but I don’t. I don’t care about anything that isn’t related to this fight. Everything else feels trivial. I know I should be trying to enjoy life, and re-engage…but right now I feel like taking my eyes off the fight may result in a sucker punch that could end me. Fatally dramatically? Maybe. But that’s where I am today. God please help me to have more faith, more peace, more of You.

And Mike – my socks don’t match.

More life

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Mom started her next round of chemo today. Her first of 7 days in a row, then a bone marrow biopsy a week later. Bob had another day off today. Woke up puking again.
Is anyone as sick of reading this crap as I am of writing it?

I have a lot of stuff inside my head…but most of it would sound like insane, unstable flight-of-ideas; so I’ll just keep it sane here (or as sane as possible). Being under this amount of stress for such an extended amount of time, or as Aimie says ‘living in survival mode’ for this amount of time—may just be messing with my head. Or maybe I’m just now thinking clearly? (see what I mean?)

I want more out of life. More than just surviving. More than just waiting for cancer to go away. When this is over….I want more. Life more abundantly. There is a lot of time to think about life while your sitting here facing death. I tend to wonder…when God gave us this gift of life, not just when we were born, or even born again, but I’m talking about when Bob was given this second chance at life….eight years ago when he woke up from that coma and walked out of the hospital that all the doctors told us he would die in….that GIFT of life: did we squander the gift? We went back to work, we clicked off days on a calendar, we didn’t do anything magnificent with the gift. We didn’t do anything life- changing…..does God want more from us? I want more from Him.

After Mom’s doctor visit

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Saw the doctor with mom…Was prepared to talk to him about whether or not the chemo was working, and if it wasn’t working-why was she going to keep getting beat up with it.  And guess what?!?!  Great visit.  He says her blood work has not shown blast cells since starting this new chemo.  And she can start it next week IV instead of as subcutaneous injections.   So it should be easier to tolerate.  He also says that he couldn’t be happier with the response so far.  One more round of chemo then a bone marrow biopsy again.

So….welcome to my roller coaster.  Was walking into this visit thinking that we’d be talking about why this  chemo wasn’t working (because of some of the comments dad’s been making related to the visits they’ve been attending together), and wind up elated with what I hear.  But again…trying to remain calm and steady through it all.  Don’t want to keep riding this roller coaster of emotions.

Awwwww, who am I trying to kid – I think there is a celebration in our near future.   Thank you God!

Bob day +17…mom Dr visit

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Aimie stayed all night with us last night.  She slept on the couch next to Bob’s recliner.  I slept in my bed all night….like a rock!  Thank you Aimie.  Katie will stay all night this weekend.  A good nights sleep sure helps.

Yesterday it felt a little like I was “on the edge”.  The edge of what? Sane and insane?  Sleep and awake? Fear and faith?  Where ever I was it was not comfortable.  A full nights sleep later…all good.  Funny that nothing around us has changed; Bob still has bloody eyes, we still drive to the clinic every morning for counts and doctor visits, still fighting cancer.  What changes is inside.  Something in me rises up again.  Faith, God, the Holy Spirit?  Is it all just sitting there under my fatigue…and when I lay it all down and cry out “help!” it surfaces again.

I am going with mom and dad to see her doctor.  The plan was to start the horrific chemo injections again on Monday.  My question…is it working?  Mom seems so tired, and her blood work is still showing cancer.  Does she need to go through another round of this if it’s not working?  Stan was over last night…he has the same questions.  But the doctors just don’t know.  God knows.  When do you stop getting beat up by chemo?  Is it always such a fight?  Can’t we have one of those miraculous healings?  How about cancer just goes away now?  Can we lay down our weapons and still win?  Or do you have to fight all the way to the end?

Just wondering….but I still believe.  If God says we can have what we have faith for (as long as it is His will—-which healing is) then we will have healing.