I'm such an ASSUMER!

Today marks two weeks since a few of us started “A Woman who Doesn’t Quit.” I was in a pretty fowl place at the time. Losing hope from doctors, heading back to California for one last try. The thing is, Im not sure one last try is something real. I’ve realized through this book that I am not a quitter but had gotten very bitter. Thankfully God reminded me of who I was and where I was going. I needed to best guard my heart with the Word of God.

I got hit with a lot of assumptions and realized had just kept my mouth closed so much of the stress and research, waiting on labs, would’ve been 10 times easier.

For those who know me well I am just a planner. I like to know my options and have spent hours at looking at worst case, apartments and guest homes, to what in the world do I do with my kids? Eighth grade is so important and she is doing so well, I would hate to mess up her 9^th grade year with cheer and other academic tracts. See, all assumptions!

This study has brought peace. In some crazy way we are all suffering some loss or weathering a nasty storm, but you will get through it. One day you’ll find that hope and grace you so desperately need. I cannot stop picturing the Field of Hope. It gets more detailed the more I see it. The path is straight.

“Trust the Lord with all your heart lean not on your own understanding but in all your ways acknowledge him and he will make your path straight." Proverbs 3:5-6 My Field of Hope holds the straightest path I have ever seen. Most of my paths look like bike trails, rough, bumpy, do I go left or right? This time go straight. Go straight Nadine.

Now I just rest and wait. The report of my Spine MRI says many more lesions but it was compared to one almost a year ago. So bizarre. Good news was my spine showed no evidence of LM. I was like “AWESOME!” and I’m sure Shelly thinks I have a screw loose. ‘Okayyy. But there are more lesions” Ya I expected that. hehe. Still no biopsy results, very unlike Northside, unless they only went to Caris then it'll be another 2 weeks.

Skip and I leave Monday for California and remeet with Dr. Kesari (Dr. K). He supposedly has a few things up his sleeve, and will let us know how long we should expect to be there. Then we can adjust so may assumptions into fact or toss it, 'never needed that!'

Prayers appreciated. Definite update Tuesday. If I’ve been insensitive, forgive me and my bitterness, I know I’ve been a pill, trying so hard and do appreciate the support from our friends and family.

 Until then peace be with you all.

Never too big to play in a box. Smiles. 

From Bitter to Hopeful

So I’ve come to the conclusion that I am bitter, resentful, and more angry than I understood.

“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other…” Ephesians 4:31-32

I read this yesterday morning and sulked like a shamed child. My name is Nadine, meaning hope, not Mara, meaning bitterness! Wow, how did I not see it. I’d complain every day, “but you can do whatever you want. It doesn’t matter where we go, what we do, I’m just going to sit in my little pink chair.” Anger and rage has overtaken the other three in the house, not to mention my curse word on social media. How did I go from encourager to depressed, angry, blogger child?

Today I gave that up. God saved the last three days of my bible study (I got behind) to pull me out of a nasty place. It’s sad that you see all this disturbance in your home and never realize it’s you. I was putting off negative energy and very much not bringing glory to God. I very much want to finish strong, whether that means it’s my time, or I get a healing miracle so I can serve my family and others in ways I’ve dreamed.

I think one of the coolest verses that I was given this week was about the field of hope.

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” 2 Corinthians 4:8-9

This is so my life. How I’ve felt over the last few months. Some days faking it some days letting it all out. I felt pressed, perplexed, and struck down, but not destroyed had not come to me yet. When I saw those three words I thought of the miacles God HAD chosen to perform in my life and that I could’ve been destroyed, but God held me in His arms throughout my suffering.

Me and Alana had a very deep conversation about all of the anger and what Skip has taken on and when she starts having tantrums at 9 years old we realize the stress they are under as well. When I explained Skip’s job and what he does and then explaining mine that he now has, she got it. Can you believe she went over and switched out the laundry for him? That’s all it takes sometimes.

Then I decided to change things up since most of our bickering happens around dinner time, and came up with battleship dinners. We team up and it has been a blast. Now obviously we cannot have the girls together, but it’s changed the mood and boosted some positivity. We always pray but added what we are thankful for.

Alana made the talent show and couldn’t sleep she was so excited and Madison has seemed to be less anxious knowing I’ll do whatever possible to get her to be at school for the last month of middle school. We have a lot of people giving us support and options for CA but still have a few days until the biopsy results return. The preliminary were what we expected, breast metastsis but we have to wait for what it feeds on, receptors. If we decide it will work to come out every two weeks we may need help with buddy passes, BOGO coupons or sky miles as it’s a good $400-500 per ticket. Otherwise we will rent an apartment for a few months. But again, we wait with preparation and no idea what is next, and still hope there is a cure, a miracle for me in Dr. Kesari’s lab.

Thank you for all the love and prayers continuing to flow and the accountability from our online study. I needed it so much. Peace be with you all.

Liver Biopsy Fun!

We arrived on time, went back quickly and I explained how Versaid is a joke and I need a bigger dose otherwise I feel it all. And so, I felt it all, lucky me. Everyone was suuuper nice before I go into this they REALLY tried. At the first removal of tissue I hear “I think she winced”.  I just couldn’t get the words out that THIS HURT and I swear they took 10 samples. I woke up in horrible pain. Skip said he knew I was bad if I was saying 8. My pain tolerance is stupid high. FINALLY they got enough Dialadud in me to sit me up to eat.

So this is how my meal went for 3 hours in recovery, ready? I had brought fruit, cheese and crackers from home. Eat a grape, pass out, wake up eat a couple chunks for gouda, pass out, wake up with a fork hanging from my fingers, take strawberry, pass out. Then I was determined maybe got three bites down,and boom out again. So wish Skip got that on video but everyone around me was worried about my blood pressure being low until I blurted out “it’s the pain meds and I’m dehydrated” Telling you I should’ve went into the medical field. Maybe we would have more cures. Gave me fluids and whalla my BP goes up.

Finally made it home and somehow managed to not faceplant into my bowl of cereal and ate half a bagel. Then I was out for the night. I promised Skip I would wake him if I needed to potty, but I didn’t. Shocking.

He made me eggs for breakfast and what did I do next?! You’ve got it, I slept! 11:30 came quickly and I forgot to put my phone back into airplane mode, but likely for a good thing. I was craving juice so I managed to wash an apple and cucumber for lunch then my mom is coming to help with a couple more. No pain today which is good and lots of rest, what i do best these days!

Okay, I’m fading fast. Love and hugs. Back to zzz.

Liver Biopsy Today 11prep,1procedure,recovery4hrs,home

Blogging. My therapy.

Sometimes it is easy. Sometimes nothing comes to me. Today is the latter. I’ve wracked my brain for the last 24 hours trying to process how they can be out of options. I think they knew it after the last scan, but didn’t let me see the reality of the scan. The stereotactic RA didn’t work, instead it formed a cluster surrounded by edema or swelling, and several new tiny tumors arose, possibly even the LM. Xeloda stopped the progression in the brain and brought my tumor markers way down, but it won’t hold the brain for long.

Our hope is my California doctor will be able to give me a few options, as long as the disease hasn’t progressed past the point of whatever that point is.

You know the one conversation that I cannot get out of my head was with Carol and Dr. May. They ordered Methotrexate to be administered intrathecally but then explained it would really only help LM. Well for me that was an easy decision, why go through the stress of that if it is not going to kill the other tumors. I said something about dying and she said, “you’re either going to die here, or die there (meaning Cali).” We were having a very real conversation and I looked at Carol and was like but remember, “I AM the 1%.” She said, “Yes you are with a tiny bit if that 1% hope. I realized how real it was when she asked if Dr. Dunbar had discussed Ridalin. I was like the ADHD medicine?! Um, no. But then quickly realized she was planning quality of life. It is like speed to those who don’t need it giving me the energy I’d need so I didn’t sleep the last months of my life away. This just got serious.

Skip and I have been working hard putting together spreadsheets, updating my book of records and sending everything to Calornia.. They now have everything they need pending the liver biopsy results from today’s adventure. I have no idea why I’ve psyched myself out because the first really wasn’t as bad as I claim it to be. But please be in prayer for no complications and the results they need to be speedy.  Cali is hoping to have a plan and us out there in 2-3 weeks and God willing no advancement of disease between now and then.

I have to talk about this bible study I’ve been working on with a few buddies online. I thought I knew the book about Ruth but let me say this study is changing me and helped me to realize a few things other than the title: A Woman Who Doesn’t Quit.

1.     I’m scared of eternity.

2.     I need much more hope in eternal glory, not present wins.

3.     Realizing that suffering in the span of eternity will be a blip on the timeline.

4.     Stop complaining about what has been taken from my life and being thankful of what I do have.

The book of Ruth in chapter one talks about how her husband up and moved their family to find food, security, and hope in another land. There he died and his children leaving Naomi and two mother in laws. He was searching for hope just like we are. Begging God for a miracle when we’ve seen so many on this roller coaster journey. Realizing I need to hope in my God much more than anything else. I so want to be holy in his eyes, and desperate to serve my family, friends and community the was he would want me to. I would love the chance to be free of this disease, but hope in eternity will have to grow in me more each day as well.

I pray my journey has inspired and encouraged you. Love, faith, hope.

(Oh and apologies for my explosion on FB yesterday. Really hard day.)

Weekly Monday News 1.9.17

Weeklyl Monday newsis back! Took me a few extra days to get into the rhythm 2017. I started a study that is blowing my mind. It is exactly where I am at. Needing hope,word of movingyour family,words of death and noreasons for why, just utter trust in the Lord. (ps my typing and hadwriting have become atrocious, another lovely gift frombrain tumors. I think I habehad a coulf of sizezures this weekbut we are ontop of ‘’the feeling” now.

Today we drove 40 mintues ti a aoointment that did not exist. But chick fik a and starbucks madeit allbetter! Wehave a serious liver biopsy Thursday (pray for no infection and good results whatever that is since we know its cancer lol.

Wedensday ig= geet inused with bone healing drug whichwipe me out, on top of starting xeloda. Should be a quiet week.

Snow brought some smiles and blessing, some ritualistic sister fighting, and some continual learnig of the meaning of life, but id overall give theweekend a 7. That’s huge on a scale of1-10 with a 9 year od 2 hour meltdawn.(probably because I removed myself from that one.

Continued prayers ofr tests andgood news a path to healing andconfirmation we are doing the right things. I don’t know the future,but I do fear it some. Just remembering to take life day by day, step bystep, remembering that I can look back at however this turns  out and say to myself,”wow, that was why I had to suffer that journey,” Until then, I will endure.

(unedited) goodllck lol

tumor marker dropped! 227 to 130 PTL

ALT and /ast liver marker dropped!! 2 points from normal!!!

<3 lots of love