Weekly Monday News July

Coming up!

*Thursday I’m supposed to do labs and Xometa (bone drug) but it’s Meet the Teacher day so I’m working on fixing that. I hope I don’t miss it!

*The following Thursday I should get another CSF draw and chemo.

There is no plan to return to California next month, it will likely be in September.

I’m still feeling good! It is REALLY hard to not think about “what f its growing,” so every time it does I start picturing my body blowing up the cancer. 

Six days of basking in the graciousness of God and his love and light. Wow. I have felt too good to be true and feel like I’m constantly having to pinch myself! This is real! I get so fired up when I run into someone and get to tell them. It’s a miracle!

Today I had a first. I have a grocery shopping buddy, and she has been so amazing. Today… I didn’t call her! I went to the grocery store on my own! I had a bagger bring them out, but I pushed a little buggy! This is a huge accomplishment.

I really don’t have much to update on. We’ve done a LOT of celebrating, lots of playing, lots of talking on the phone, and I even rode my bike at Blankets a little! Blessing after blessing, this week has been unreal. Thank you for still following, hopefully I will get a little more interesting soon!

I do have a few blog posts I intend to write, but right now, I cannot! Only 6 more days of summer vacation!!

Hugs to all!

"Miracle #476504983760846703586056... check!" -God.

33 Let all the joys of the godly well up in praise to the Lord, for it is right to praise him. 2 Play joyous melodies of praise upon the lyre and on the harp. 3 Compose new songs of praise to him, accompanied skillfully on the harp; sing joyfully.

4 For all God’s words are right, and everything he does is worthy of our trust. 5 He loves whatever is just and good; the earth is filled with his tender love. 6 He merely spoke, and the heavens were formed and all the galaxies of stars. 7 He made the oceans, pouring them into his vast reservoirs.

8 Let everyone in all the world—men, women, and children—fear the Lord and stand in awe of him. 9 For when he but spoke, the world began! It appeared at his command! 10 And with a breath he can scatter the plans of all the nations who oppose him, 11 but his own plan stands forever. His intentions are the same for every generation.

12 Blessed is the nation whose God is the Lord, whose people he has chosen as his own. 13-15 The Lord gazes down upon mankind from heaven where he lives. He has made their hearts and closely watches everything they do.

16-17 The best-equipped army cannot save a king—for great strength is not enough to save anyone. A war horse is a poor risk for winning victories—it is strong, but it cannot save.

18-19 But the eyes of the Lord are watching over those who fear him, who rely upon his steady love. He will keep them from death even in times of famine! 20 We depend upon the Lord alone to save us. Only he can help us; he protects us like a shield. 21 No wonder we are happy in the Lord! For we are trusting him. We trust his holy name. 22 Yes, Lord, let your constant love surround us, for our hopes are in you alone.

Psalm 33Living Bible (TLB)

I awoke very early this morning, God once again tapping on the shoulder to wake up and sit a while. I cannot stop praising him with thankfulness for I have seen miracles I cannot explain. I’ve kept a secret from many of you for the last few days, and it’s time to reveal it.

When I was in California, many of you know my doctor accessed my ommaya reservoir to collect spinal fluid (CSF) samples. I was curious if they had come back and emailed the NPA. This is what I got back:

“Hey Nadine,

Glad you made it home ok. I just released the cytology results to your MyChart. It is normal and has no cancer cells in it that can be detected. There are some macrophages in it which is an indication that your immune system is working. Please let me know if you have any questions and congrats!
Minh”

I started SCREAMING and crying, “OH MY GOD, OH MY GOD…” maybe 150 times as I was at a loss of any words. Skip ran out of his office with a look of fear and I could barely talk. Hugging, crying, Alana was there, and she jumped of facetime and was instantly calling her sister. It was a moment I will never forget. Screaming, mouths dropped, falling to your knees, whatever the many family responses have been, they are all in awe of how. How can this BE??! I don't know but this is the best I can do.

My answer is, "it’s simple, prayer." (and maybe a good dose of positivity, unicorns, medical advancements and listening too, but these too are all gifts) Team Nadine has been pivotal in this fight. God is still making miracles we are just to stubborn, analytical, busy, distracted, whatever, to see that they still exist. I’ve had several along the way, but this is the biggest yet! He put me on the miracle path months ago, and basically just lay each stepping stone in front of every step we took. Dr. Kesari I believe is at the end of the yellow brick road and God has given him the ultimate miracle to hold and give when the time comes. I truly believe I can be cured of this now, I've always had a tiny level of doubt. My praise will always be to God forevermore. It’s not my plan. I am not in control. I may be led to change doctors, or get a tap on the shoulder by the Holy Spirit, I just trust that I’m going to have God’s word, the Spirits nudge, guiding my every decision.

This is a true miracle. I only know of one person, maybe two, with no evidence of disease and if you google LM and cured, you get nothing. Just the dark, dismal gloom and doom of LM. When I was diagnosed, my doctor told me it was terminal and usually within 3-4 months if treated. I read somewhere that 20% of cancer patients actually HAVE LM but are not diagnosed fast enough and 15% die before they even know, and is found through autopsy, leaving only 2-5% diagnosed. It is a very sad, rare disease that we need more awareness for. 15% of cancer patients is significant enough for me! Time to create some crazy awareness for LM on top of celebrating a real time miracle.

Unbelievable, miracle, “almost” cured.

Cannot wait to take the almost out! We are close! Thank God for his faithfulness to our prayers! We will never stop and we will never give up! Cancer is not welcome. Ever.

Bless you all! Thank you for all you have done to help us get to this point! You are all so special and I’m honored to have such a beautiful team at my side.

With great excitement and love,

Nadine

Leaving Cali! Better late than never!

I JUST found this... 

Figured I would go ahead and blog from the boring plane. Today was mostly uneventful. Our flight was delayed so we are getting kids later than hoped. Long day of flying and sitting around but my body seems to be holding on. We land in 49 minutes! I can't wait to see my little people. 

I am finally ready for this boat to slow down a little. We have been going non stop full speed ahead since summer began. Definitely getting stuck in that old kind of normal where you're fighting to catch a breath. So rest of summer, calm. Well after Shawn Mendes of course. Haha. 

 

You may have seen me posting more about LM, I have some ideas on how to create more awareness for the disease. I've met 4 lepto survivors in this last month and powerful women. We are going to fight. We are going to win. Even the stage 4 sisters, we are here for the fight and we get the chance to show the world, show cancers, we are not going to surrender. 

Leptomeningeal Carcinomatosis

Leptomeningeal Metastsis

Leptomeningeal Disease

Lepto must be stopped and I believe it begins here... Ready for some miracles? I am. 

What A Good Trip!

Yesterday seemed to go on forever! In a good way!

We went to our 8 AM appointment with no issue because we went to bed at 7. Laugh all you want but I'm crazy about staying on Atlanta time. And good for me, my phone never figured it out! 

I did my infusion of Carboplatin and got to drop Keppra! We are going to wait another two months and if nothing is progressing we will continue this regimen. I pray by September 9, my one year diagnosiversary, I claim the miracle. Want it so bad. 

I upped my dose of Charlottes Webb and I truly feel it's helping the make the difference as well as going on a clean food diet with a little exercise. The other half being positive and staying strong!!!

After he infusion was over we walked a couple of blocks to whole foods and got some waters, plane snacks and lunch. Uber back to the hotel where I crashed out for 2 hours. See we got stuck on the 2nd floor and didn't realize it was just over the bar. The noise was unreal, even with ear plugs. So a nap was well needed. 

I finally woke up and we decided to go to dinner and walked the promenade shopping and listening to music. It was beautiful outside. We ended at the waterfront and I found my tiny house on the beach. It's only 5 million. Ha!

Ok. Well I am going to go. Had room service again this morning. Our little treat that we are totally hooked on, and we are packing so we can soon leave for our 12:00 flight!

See my people soon!! Love you all. 

Nadine

Bubbles

Another story I was very hesitant to share at first, was about an anonymous letter Skip received at the end of a plane flight. After four hours of flying we stood and waited our turn to get off. A women slid by Skip, handed him an envelope and off she went, never to be seen again. 

When he peaked inside the top said "you may need to use google translator. This is what it read:

Oh, I didn't mention it was actually in Portuguese?! Take a deep breath because this is what it said. I'm so ready for that kind of healing. I watch the bubbles in my baths and am reminded daily of this note. It has helped me believe the miracle, though it was a while ago will happen in Gods time:

"During the flight, your friend received blessings from heaven. A curtain of white lights was over her the entire time during the flight. At the beginning, dark gray bubbles left many parts of her body, cleaning the affected organs, especially the brain , bone marrow, liver, kidneys and knees. Then, a sparkling white light filled the parts that lost the diseased matter with “health”. The body is recovering her immunity. She may feel healthy, something very good happened in her system during the flight .

I suggest reading the book Healing Quantum  - Deepak Chopra!

God bless you !"

I had decided not to show it until after my scans and then again decided not to share. But now I will. I cannot explain it but how many times have you heard of someone doing that?? On a plane. 

Beauty and love. She saw a vision. 

God I am open armed ready to 

accept whatever it is you have planned for me. No opposition. No stress. Please help me receive this miracle. People ask where they are, that Jesus "did" all these miracles, right. Well look, something is going on, right now, right here, in this time. God is so real. I wouldn't be here to tell you if it weren't so...

Evelyn's Poem, Hope

I want to share a story that happened last trip to Santa Monica. skip and I were wandering back from the beach when I saw a girl writing on her vintage typewriter. I was drawn to her. My mind took me to the memories of my mom and how very fast she was able to type on it! Yes, this is the pre-printer era young ones!

We wandered over and there was a little box that advertised character art or poems on an index card. Skip speaks out, "can you write one about hope?" She threw everything down and jumped for the opportunity. 

Now let me take a step back. I was done up, wig, wide brim hat, and sunglasses. It wasn't like she had any clue I was a cancer patient or a unicorn but this is what she wrote:

Tears were streaming out of my eyes and then she reads unicorn and she got my "shut up!! There is no way!"

We got done and talked a little about our lives and how we ended up at the same place at the same time. That was no coincidence. We took a few pictures and danced around the sidewalk and went our separate ways.

I turned at the last point before going into the hotel to make sure that it was all real. She was standing with her arms raised to the ocean. It made me smile. It was beautiful. Thank you Evelyn Schmelling, you're one of a kind. 

https://pioneersofourselves.com/

Goin' Back to Cali, to Cali

Skip and left home at 6, filled up on a chicken egg and cheese biscuit (was craving) and headed to the airport! We arrived with no stress and basically walked up just as they began preboarding. Then we slept.

It all seems very surreal. April 12, only two months ago we were there on out first visit being blown away by the open attitude and willingness to go beyond the norm for treatment. Now I sit here scared of jumping to the next step, whatever that even is!

I've been listening to Kopra while I wrote my blogs today and I feel like Gods just whispering in my ear. 

"I will let go of all fear..."

"Let go of opposition... Today I will resist nothing... You only find victory when you refuse to oppose!" 

"Many cases a solution will seem to just happen magically..."

"I will oppose nothing that occurs."

You ready!??? I just saw Dr Kesari!

He is awesome. Did I tell you he was awesome. Oh I did. He's awesome. Any doubt, fear, anything, completely obliterated. 

We talked to Judy his other nurse pa first. Missed you Mihn! Judy is fab too!! We got through all the boring stuff and then we got to talk. He basically laid out 3 options and I was not going to choose. 

A. Do carbo every 4 weeks for 2 cycles and rescan. 

B. Do Opdivo and Carbo only. 

C. Do Opdivo, Carbo and Something intrathecal. 

We chose A!!!!! And he was all about it. After 8 weeks we will have the current cytology back, new genomic markers back and scans. If then things look good or better we continue. If they look worse or he is unhappy with something we do Opdivo. If cytology is bad (which it hasn't been good) then he's thinking a cocktail intrathecal chemo which got shut down and talked about. 

Not there yet and I get 1 chemo twice over 8 weeks starting here tomorrow. Ahhhhh. I'm so excited!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Watch out cancer, I found the miracle Doctor, and with God on my side, anything is possible!

Getting port out as no Opdivo and woohoo we are ready to go eat!! It's been a long day but it is SO nice to not have that "I don't know what to do stress" running me nutty. 

"A horse is a vain way to gain deliverance, despite all its great strength it cannot save. But the eyes of the Lord are on those who respect him, on those whose hope is in his unfailing love, to deliver them from death, and keep them alive in famine."

A unicorn is a good way to liven up things, but is not a replacement for God. He is the hope we trust in. Thank you Lord for this medical team, my team, all those who pray so hard, everyone. Thank you for everyone I meet and all who just listen. God bless. 

Totally had fun with my unicorn too! 

Bye bye NorthSide, Hi Emory

I walked into the tower office today and am greeted by none other than my most favorite friend there, Troy! I'm going to totally miss him. I might even have to visit. He helped me stay positive during my first ever intrathecal rounds. 

My blood work looked good but my WBC are actually low so please if you are sniffling, coughing or ANYthing you cannot see me. And if you think it's allergies, pretend it's not, and please refrain. I know it's not easy but if I get sick I don't get chemo in CA and that will be one huge waste of a trip. I've been very slack about it because they've been higher than normal, but we have a low level and I don't screw around with those.

I had an easy access and now I'm receiving my Xometa dose. It's only 30 minutes so we will have plenty of time to grab a nice lunch and head to Emory. I cannot believe this is the turning point!! Seems a bit surreal actually. I'm not a huge fan of change, but the closer this one gets the more excited I get!

Stay tuned for the live additions...

Skip and I just ate breakfast at Flying Biscuit! Nummmmmy! Now I'm full and guess what Emory isn't busy!! I got here 30 minutes early and already waiting in the back! 

I'm so excited to see her! I can't sit still! Here we go!!!!

Just talked to her PA and I approve. She totally remembered me from when I was originally diagnosed in 2013 with Dr O'Reagan!!? Lady had a killer memory and remembered I was a designer? I liked her regardless so impression 1 is positive. Waiting on Dr G to finish up with someone and then we talk!

Lots of talking. We had a great discussion about everything and she has and is going to follow up with Dr K. So the PET and all MRIs look stable, in some cases better. Basically over two months nothing appears to be new or grown. So that's good.

Why am I not more enthusiastic? Because I wanted a better report. Stable is good, gone is what I dream about. I just feel numb about it when really I should be jumping up and down. In two days I'll have defeated many, many odds. 

After we discussed more, now I have a new decision to make. Opdivo was obtained and we go to CA Tuesday to get it and my other chemos. She too had a hesitation about using it. She noted that things were looking good and working, why mess with trying to add something that we don't know the side effects because there's no info on Opdivo with Carbo/Alimta. Made sense and I've had a Dr bring up the same thing, but I've also had two Drs in CA say I should be on it. Not easy for me. 

The wait today was Emory like and that was hard but it was super quiet. We are wiped out and I'm looking forward to a good night sleep. Hoping the Zometa doesn't hit me hard. I don't think it did last time. 

I'm going to wait for the two doctors to talk tomorrow so they can devise a plan. I'm always nervous about getting a new drug, I'm now seriously stressing over this. Please pray for me like you all always do. And pray they make the best decisions to get us to our miracle.

Weekly Monday News

Hey! Just wanted to post an update though I'm a day late.

Today is scantastic day. Hoping for awesome results and continued confirmation this week that I made the right choice to go to Emory.

I already had the PET scan and now I'm waiting for my MRI that was scheduled at 2, but apparently they are wicked behind, so maybe 4:00. So why I am not in love with this place. Too many people and everything is always 2 hours delayed. Breathe and know it going into it, right?

Tomorrow I am free, and may take Alana to the doctor. She is still having those freeze episodes where she can't move. I thought it was heartburn or precordial catch syndrome (I had it a lot as a kid too) but shes not having it in the same places. She's also scary ADD at the moment and is calling herself Dory and realizes she is having a really really hard time remembering and focusing. Just want to check in for her before school starts.

Thursday is my last day at Northside where I will get my bone chemo. Then at 2:00 I have my return to Emory day and I will finally see Dr. Gogenini. It's been since last April, but she was so awesome when I was diagnosed. We will go over the last 10 months and today's scans. (It'll be hard as I know they will be ready tomorrow.) hehe.

Friday through Sunday I vote we go back to Ellijay, but then again, It's raining and filling my pond back up.

We leave early Tuesday morning for California, will get Opdivo and Wednesday my normal chemo, unless these scans show we need to change things up. Thursday we come home late and thanks to nanny, pappy, and miss bonnie, the kids will be well loved, taken care of and taken to their camps.

I think think think that is it. I'm not sure when we would have to go back out to California, but supposedly my doctor will be able to transfer my Opdivo to Emory and I can do it here. I can't wait to figure out the next step of this journey. I'm truly hoping and believing that the cancer is dying in a big way. We need this.

Ellijay 4th Weekend!

Greetings from Ellijay the place where we can work hard and never know it until dinner, and just wild peace and insane bugs. The bugs I think are toxic giants or maybe I have not seen bugs like this in a while but they’re nuts here. The bats take care of mosquitos, but I had to take care of the mega horse fly and the black wasp is still roaming around inside, just haven’t seen it in a while. Then Alana got stung 3 times on her back while riding the dune buggy so we called it a night. Surprisingly she never cried? She was so strong wincing as it stung.

We’ve had an ice cold baby pool outside for two days now and it has been so refreshing. Just pull up a chair, umbrella and stick your feet in if you can! Today it finally warmed up a little and the kids were splashing and laughing and having a blast.

Mom and Skip have worked tirelessly on the tool shed and WOW it is so impressive. Skip used translucent roofing, smoked, and it’s awesome. I feel bad that my mom is up there and I can’t be, but I guess having 3 kids is a big enough chore for me. Plus, I’ll make them dinner so they can relax.

Skip found the big black wasp today and trapped it in our mudroom but its latched and he had to go in! I took a video but it was unimpressive.

We left around dinner time, stopped by Shanes and then found out a few people in the neighborhood were shooting fireworks off at the lake. I was looking for low key, no driving, and let me say they rocked. We lay on the hill, and they were bursting over our heads! Then we got sparklers out and had a little photo family fun.

I forgot to mention coming home to 97 degrees upstairs. Thankfully it was shady? No. We decided to have a camp out in our living room and I guess  mosquito made it home with us, because I’m a bitten disaster. Itchy Itchy AYAYAYA!

Today is scan day. I’m a little freaked out but hanging. There were some things on my last MRI and PET that I would’ve like to have known about, but I should’ve known better. I’ve gotten slack on collecting and reading reports. I guess I was so desperate to let go and let doctors make calls, that I checked out. Not anymore. Back at Emory (I still don’t love this place. Too big) but I see my breast oncologist Thursday and we will go over the last 10 months and todays results. Getting antsy already.

I think that is about it. I’m glad to be in the basement level as the massive red blob moves over the hospital. It looked pretty ominous. They’ve give me a 2 hour possible delay (at least they told me!) so I guess I’ll work on my scrapbooks. Got my chemo bag and now a couch.

Oh, I called this morning and my echo was normal. THANK GOD! So now I can quit worrying about that too much. I’ve increased salt intake and exercise and it was pretty normal for me all weekend. I’ll post a weekly Monday News, even though it’s Tuesday, so everyone knows how to pray. It’s going to be a crazy 10 days. Love and unicorn hugs!

Just the Place

Hello long weekend! We are back on the road again… YEAH! No this was a quick drive with our car bursting from the seams, and it was AWESOME. Because I’m in a happy place, I don’t have to make a reservation, my mom and Isla are here, I have my silly fun family and its cool in these woods, and I AM NOT IN A CAMPER! YES! Though Skip loves the bed in the camper. Seriously.

So I have no new news which means I won’t hear about the echo until Tuesday which means I’m likely normal. MY blood pressure leveled out some – I started adding salt to my meals (I hate salt) and boom, we have some normalcy.

Oh, I did made banana bread today, planned and packed food for 3 days, and now I’m laying here on the couch waiting for the laughter and talking to calm down. I know I cant stop talking about the change in my kids, but its truly miraculous. We walked 1 mile last night to the top of the hood and back, and watched our new addiction The Flash. It was good family night and pray and pray it continues.

You likely won’t hear from me this weekend as electronics are going to be used at a minimum, but if anything happens cool, I’ll try to blog it. Until then, please continue to pray the cancer is dying, not growing, that my echo and upcoming scans show positive results and continued confirmation that we are on the correct path.

Have a happy and blessed weekend.