CSF and BRAIN

I'm not sure how to start this blog entry. I've went through every emotion in the last few hours. From anger to questioning to not understanding to peace. And all the other emojis in between. You know those silly little faces we all over use to show what our facial expression would be.

At some point today out of boredom I called to see if the spinal fluid pathology was back. My phone call was returned a few hours later. They've found cells in the spinal fluid. NO! Whining and complaining begins. I can't wrap my head around this. We were supposed to get three good results in a row and be on the road to miracle recovery. 

Instead now we are back here again. How lame. After my meltdown episode I think "MRI for the brain to see what the two spots have done". I have a really bad feeling about this. Scheduled tonight sometime. 

I called my radioonc to see if he can hook up with Kelly may to give us something to do while we literally sit and do nothing. He didn't respond but about 20 minutes later I got a call from nurse saying she was changing my fluid for an MRI. What!!?? That was fast and no one told me I was getting one. Well it just so happens God has put me and Dr May on the same wave length. She was thinking what I was thinking, ordered the MRI and Dr Simon was never involved. How more God interventions do we need to realize he is being true to his promises? 

I'm on pre meds now but basically waiting. Wondering if they grew. Or if we see nothing. If they'd fully breached or if they shrink to an oblivion. God is giving us what we need. A mini Northside Hospital All-Inclusive Get Away. Right. 

I hope they're gone but I don't have a very good feeling about this. At the last minute I felt I needed to ask people to pray. I'm not in this alone. We have to have the team at all times, we just weren't ready to tell the team what we were up against again.

I just got done and they said I would have to wait until the morning to get the results. So I asked if I could look at them, and you know what, they let me! The pictures weren't as big and I was overwhelmed with how many there were but I remember exactly what the tumor looked like last time and I didn't see that this time. Of course I was not studying them but I think more so I didn't want to see spots all over. It was my worst nightmare. 

Maybe Dr May will have serious insomnia and feel the need to get me the results tonight. That's horrible. No she needs to sleep. And on that note skip ran out to find me an egg crate mattress to help me sleep. I've got the best man ever. He ordered dinner and picked it up and let it sit for 2 hours until I was back. We didn't know they'd be that long. But he waited to eat with me which warmed my heart. We had a little romantic room 335 dinner in the corner with the lights dimmed. Remembering very quickly how easy it is to slip back into normal and apparently we both have been praying that doesn't happen. Skip thought this might be his fault for praying that but I promised he wasn't alone. Today we held each other and despite my annoyances of being stuck here again, we never let go. 

Sweet dreams they say. I think it will be a drug induced sleep at this point. I'm seeing things, I hurt and I'm on no sleep for two days. Looking forward to tomorrow when we get better news.

Take away my foolish desires, and let me find life by walking with you. (Psalms 119:37 CEVUS06)

Show me your love and save me, Lord, as you have promised. Then I will have an answer for everyone who insults me for trusting your word. (Psalms 119:41-42 CEVUS06)

Chemofree Christmas

So I have some pretty awesome news and a fun God story. This morning the nurse got us up and said we were going down in a few minutes for the ultrasound. We got ready and sat on the bed facing the door and she pops back in saying it was going to be a while longer. 

A few minutes later, expecting the ultrasound ride, Dr May pops in. She was cracking up saying she needed to take our picture. I was in shock but super excited!! We talked and cut up like we always do. She went of blood counts and then I had a chance. “What do you think about me not doing chemo #6.” And she said I was thinking that or a dose reduction but I'm not sure you even need it. Ahhhhhh I about jumped up and hugged her. I have been praying for confirmation and I was pretty sure this weekend nailed it for me, but that was just so cool. Not to mention the fact I wasn't even supposed to be in my room!

We chatted more as I begged to go home but she said we had too much to accomplish - she was trying to get urology to see me today to possibly remove the stent. Since the ultrasound I have no orders and I'm sitting here watching the clock tick by. So I made a few calls. One to my urologist to see when they could see me and get this thing out and second to Dr Mays office to get the pathology on the spinal fluid from last week. I know!! I forgot about it too!! 

I still have a super low fever of 99 but that's about it… I can do this from home!! Ahhhh. Please Lord let me go home. Please!!??

Anyway. Just saw charge nurse and explained how this was silly and wondered what we were supposed to be doing. 

I am supposed to get IT chemo today so have to figure out if that is still happening or not. Lots of up in the airs and that's all I have to write about right now. 

But the coolest thing… I'm DONE with AC chemo!!!! Ringing my imaginary bell! It's going to be a Chemofree Christmas!!!!!

Northside Atlanta Updates

Port Access time. Except this time she listened and when we got no blood return a magical thing happened. She stopped and a girl named Lana took it from my arm. Hallelujah!! So why am I accessed? Blood transfusion. They're matching my blood now and should be getting my new blood through the evening. Back to Lana, she had never heard the Lana song. She was so excited. Haha!

Abdominal ultrasound is ordered to check for spleen rupture or other bleeding. That should be tomorrow sometime around 8. 

Have about 30 minutes left in my blood transfusion. Had no reactions just a testy port. I awoke to being in a puddle of sweat, again. The only place I don't is in Ellijay. Guess it's a sign. Haha. Getting one more now and it should be over around 5:30AM, then they will run labs to see if it worked and where everything else is at the same time. 

Supposed to get IT chemo today. It's been 1 week. Once a week for 6 weeks. Looking forward to getting doctor Mays perspective on all of this tomorrow. Should be interesting, especially when I tell her I'm not doing a 6th AC chemo. I've been praying about it as it was heavy on my heart that it was a very bad idea and I'm pretty sure this is confirmation enough for me. Will update in the wheee hours of AM!

Labs look awesome this morning!! Praise GOD!!!! Not Neutropenic!! WBC at 5. Still a little anemic at 9.5 but sooooo much better than 6.5!! Yay blood!! And my platelets are still low but not near a transfusion level.

Waiting on ultrasound report and waiting for urology to come by... And waiting... And waiting... I could do this from home. 

Neutropenic Fever

Twenty four hours ago every couple of minutes in my house you heard “beep, beep, beep. Beep, beep, beep…” The sound of my thermometer getting its work out. I was having left side abdominal pain, which is where the spleen is, so my eyebrows raised. Mine is enlarged so I started learning about the spleen, it's functions and what a rupture may feel like. Spontaneous rupture without trauma is rare. Eeerk. Brakes. Rare. Basically that could be me. Kept digging and Neupogen and Nueslasta have a rare side effect of spleen rupture. So with the increase of temperature and some new pains around 8 PM we started making decisions. My mom came up, Vicki watched kids until she came, I called both hospitals, Atlanta and Cherokee asking about their protocols for Neutropenic (no white blood cell/no immune system) patients. Atlanta, “we will give you a mask and try to get you back a little faster. We are very busy.” Cherokee, “we will get you right back, we are not busy yet.” Thought was get a little blood work, maybe an antibiotic and then be home by midnight. Cherokee was awesome. They masked me outside, wheeled me straight to a room and knocked through things like lightning. My IV never hurt and she got blood out of it for the 10,000 viles. I was in love with the attending physician. She was on it until she said, but we need to admit you. I'm pretty sure skip made an ugly face and my mouth hit the floor. This was not going as planned, yet I did have an overnight bag. It was time to start the prayers and I'm just saying I've got some killer amazing prayer warriors on my side. We got a room with neutropenia alerts so everyone had to dress out before coming in. Loved my nurses though they did stuff all night long. Fever broke at 4 AM and felt kind of good. This morning the doctor made his rounds and was super nice, I really liked him, but two hours went by and the nurse is starting to tell me they're doing a CT with contrast that I'm highly allergic to. I want trying to be ugly but my first words were, “that's brilliant.” Why in the world would you give a patient who barely has any blood something that may cause anaphylaxis? And so it began. I got a boldness from above. We got the oncology doctor on the phone. We talked through things and she had not talked to the ordering doctor of the CT scan. I know he was being helpful but think she agreed with me. I mentioned the fact I went in with fever AND abdominal pain and though I know it's rare I couldn't figure out why no one had done a simple ultrasound. It was perfectly in line for why my counts would be dropping so low so fast! She said bleeding. She had suggested I hang tight for the night and then call my oncologist in the morning to get an order to be transferred. Also explained how I should always go to Atlanta no matter what. I told her I didn't think I'd be admitted. Funny part. She's who admitted me. Oops. Within 5 minutes I had a call from the floor doctor (who don't get me wrong I really liked and who apologized) that I was being transferred to the Atlanta hospital to be under her care. Well that's cool. Guess we ARE on the same page. I'm sure it's not cool to have a patient up all night that's not even your patient. About an hour later I got bucked into the EMS stretcher and immediately knew it would be a fun ride. I had them rolling about getting me out of germ land and pretty much didn't stop talking until they left. Larry was the one who sat with me and he biked, hiked and had lots to talk about. It made the trip a lot easier because it kept my mind off the fact I had to pee sooooo bad! Haha. They told me they were taking me to Key West. Somehow I ended up at Nothside hospital but I ended up on the oncology floor! At first I didn't know and my nurse comes all up in my face to introduce and I'm backing up asking about gowns. She smiles and says we don't have to AND I get to take off my mask! I can breathe again! I waited for a couple of hours to get settled but I was IV-less so I walked around, sat on my window ledge, moved to recliner. Basically anywhere but the bed. And this is where I started except with people coming in and out explaining things like being discharged and having to be readmitted to scarfing down food skip got, it's now almost three hours later. So my plan is to update via blog from this point farther. Facebook has been wonderful and the prayers are more than we could ask for, but for me, this will help. So stay tuned to the next blog, Northside Atlanta Updates. 

Getting sick on IT Day 12

It's one of those days you wake up and you know it's going to be one of those days you just need to turn over to God. 

The first Monday of thanksgiving break we always serve at the Roberts school sorting cans and making dinner bags for the people of Acworth. It's one of my favorite days and in my head I wanted to be there so badly but today is also day 12 and I've been really sick.

Today will mark the end of the first six weeks of intrathecal Topotecan. Wow. Praying today continues to go well and we are sending off again today for pathology. I really have no doubt that it's clear, but I am having a hard time turning over the unknown/what ifs to God. There are so many possible side effects that can occur at any time. It's scary but I also cannot live in fear. The next 6 weeks I get once a week. Praying that's enough to continue to bring me through symptom free. So far this is a miracle. I feel like when I hit the 14 week mark I'll be able to breath a little easier. It's my number. 

Breathing. Now that's another important word. I finally picked up big and littles coughs. Want to see a viral cough spread like wild fire? Give it to some one with dropping white blood cells. Holy smokes. My body was playing around with a fever last night and I can't seem to get this coughing under control. It'll be good to see the dr this morning though I have a funny feeling it's going to be a bit more involved than my other visits. 

I read an awesome article this morning about being in the valley. There was a part where she talks about the scripture where God pulls us out of the slimy pit. So have been there. I can picture myself on solid ground just outside the pit and the path there. Just a little scared to walk it. Be brave. Be brave I think. I know he will help me finish strong. 

“I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand” (Psalm 40:1-2).

Thanksgiving Service at NorthStar

It's a good thing Madison had a friend spend the night because I'm not sure Skip would've been able to hold me back from attending church this morning. 

We turned on the 10:20 service online and lay on the couch. I still have no energy but I am very thankful I can still watch church from home. Every song this morning touched my heart and I wanted to be there to stand and worship so badly. 

Then I realized today was the day Mike doesn't preach but instead people go up and tell what they are thankful for. People pour out their hearts in thanks to God for so many things. I so badly wanted Skip and I to stand alongside them. We have so much to be thankful for. 

I would say,”my name is Nadine and this is my husband skip. A little less than three months ago I was diagnosed with advanced stage 4 breast cancer. 40% of my liver was covered in lesions, I had masses in my abdomen, bones, spine and brain. In a little over 6 weeks ago they told me it was in my spinal fluid giving me roughly 4 months to live. Today I stand here with 5 chemo treatments complete and 11 spinal fluid treatments in. My tumor markers have dropped almost 90%, my liver scan showing no lesions and my first cytology on the spinal fluid showed no cancer cells. If you don't believe in miracles jump aboard our journey, it's been an unbelievable ride. God is still very much in charge and listening. Glory, honor and praise to God for allowing us to be a part of this miracle and for the healing we do believe is happening. I want to thank my husband who hasn't left my side, who has been my very best friend through every moment. I've never felt closer to him than I do now. For my children and their amazing prayers, their hope, faith and positivity. They make me stronger. For my family who drops everything to be there for us at a moments notice. For my family and friends who have worked so hard to help us in every way. From prayers to raising money to babysitting to helping with school projects. From groceries and meals to cleaning our house or just stopping by to say hello. For the schools my children are in and the teachers and staff who have loved so hard on my babies and prayed for us continually. For NorthStar church that when I had to make my last day on staff a reality, that they truly never stopped loving me. The people and prayers of this church have been amazing and we are so thankful we made it home over 12 years ago. For all of those on #teamnadine so confident that we will be the 1%. We are so very thankful for the many many blessings we've received from so many over the last months and just thank God for showing us what really matters. Thankful that our new normal is slower and more precious, that we see every day as a gift instead of just another day. Loving, holding and praying more than ever. God is good and we are thankful for another day. I thank God for using our story to encourage and inspire others, but mostly for those who now want to journey with you as well and for those of us who have deepened our relationships with you. Thank you.”

I probably would've had to have it written down otherwise I would've been a basket case. So really, this was just better all around and I don't get the germ exposure. 

I am thankful for so much more... That's all I could've said in two minutes. Happy Thanksgiving to you all. May it be beautifully blessed. 

Awesome Scans and Markers

Just wanted to document the week... it's a long one:

I wanted to take a moment to write about our good news. On Monday I was supposed to get my echo and my ultrasound, but my tummy woke up growling and when Skip asked me for food, I never even remembered I was supposed to be fasting. Well, it was a blessing because I didn’t have to wait and I was able to schedule it at the same place I had the first the following morning.

What we didn’t know was that when we were called it was going to be the same tech! (Though I secretly knew it would be her) I was so relieved because I remember how thorough she was. I thought this was so cool because now the radiologist could compare both reports. There was a little mix up with orders but she finally settles in to start the exam. She starts with the liver and I’m looking too. I was thinking it but not assuming it, and then she said something like a shock in her voice and then all I remember is, “there’s nothing to measure!” I instantly started crying. Forty percent of my liver was blocked only 8 weeks prior. One word, MIRACLE!! There is no way! We were in shock. She said she saw no fluid, my kidneys looked well and the thickening in the bladder was shrinking. The ONLY thing she saw was a faint lesion still on the spleen that seems to be hanging around. It’s expendable I guess. If its gotta go, it goes!

She basically walked us through everything, even though she is technically not allowed, which was AMAZING. We got up and Skip and I hugged hard and then I hugged her. Im pretty sure we were all crying. We had just witnessed a miracle. She said she had reviewed the prior study and thought, “wow I was thorough.” She also said she had told herself not the expect anything crazy. Well, this my friends, was crazy!! Crazy God amazing!

We left and literally ran to the fountain in the plaza and danced around the ledge of it laughing and crying and being amazed yet again. I called and texted all of my family, and told a few friends asking, and was waiting to tell our kids before letting the word leak onto facebook. I even turned tags off just in case. I had SOOO much energy!

We were running an hour behind at this point so I texted my next doctor to let him know we really didn’t need an exam but that if it was okay I would swing by for a hug and tell him my good news. This is one of my doctor daddies, Dr. Barber! When I arrived and checked in to let him know we were there, I hear, “Nadine!!” One of my breast cancer sisters from Dr. Namnoum was there!!! I’ll never forget when God made us friends. Dr. Namnoum will give you another survivor who is willing to share and be there for his new patients. I sat for an hour in the Publix parking lot talking to her. The next day after a series of emails, we find out we go to the same church!!! It was awesome. So I saw her, we got to chit chat for a little while and I was so happy! I was telling her the awesome news and we had our own little celebration in the waiting room.

They called me back, I know people had to be super unhappy with me since it was packed and I had just got there, but they just didn’t know my appointment was now a hug!! His nurse Jennifer saw me into a room. We had actually never met but apparently she had heard of me, had even found my blog and knew me as being Dr. Barber’s favorite patient. Shh, that’s a secret, HEHE, but that made my day even better. We started talking and I then I got to share the news. He was near speechless and I saw the tears in his eyes. This is a doctor who has texted me several times he would be praying for me. He gave me the Kelly May referral. I LOVE this doctor and was so glad I got to celebrate in person with him.

Then we shot over to the Tower where I get my IT chemo. Think it was #10! Wohoo! Two to go and we are weekly! I told Dr. May first the news, before I even sat down. I am not up to date on all her looks yet, but I’ll call that one shocked. I think for the fact that I knew before she did and that it was gone. I know I expected it to have shrunk, but to see it gone? That was unreal. My white blood cells sky-rocketed to 10,000 from the lowly 700, so the shot definitely worked. Praising God I had no side effects! Not a single one! Another unheard of thing with that drug.

We left there and headed to Flying Biscuit. I had been fasting for the ultrasound and had not had anything and Skip had an eggo. I don’t think it mattered what I had to eat at that point I was starving.

Finally we were home and encouraged Skip to go ride after madison got home so we could tell the kids together. He was packed and ready, and lay down on the bed with us as we watched Saving Santa. Well, we fell asleep while watching the movie, I think I just dozed for a second because sadly, I was “into” this movie. Yes, I will have to see the ending at some point. Anyway, I look at the clock and it was 4:45??!! I KNEW Madison had not arrived because the dog never barked, and instant panic hit me. I picked up my phone and I had a text with a picture, “bus broke down.” Relieved. Until I saw the reminder for Reflections Ceremony at the School in 10 minutes!!! Oh no!

So in a mad rush we go. Alana is in nothing appropriate, hair still not brushed from crazy day and now Madison cant be there! Which means we cant tell the kids and I want to tell everyone! But as always God’s perfect timing prevails. We drive to the corner and her bus pulls up! YES!!! So in the car on the way, so NOT how I envisioned this, we are telling the kids the AMAZING news!! Both kids clap just like me when Im excited and there were a lot of cheers!! We arrive in the parking lot snap a photo and boom! We have survived the day and came out with some pretty awesome news. Alana received two first place medals and then we celebrated with dinner out at Taco Mac and went home to watch more of our Star Wars marathon. One and a half movies left and then it’s IMAX December 18^th for episode 7!

Next we got reports of my tumor marker. It has decreased from 2,900 to 290 in 8 weeks. That is UNREAL! My heart also appears to be functioning better despite the chemo! So we continue with two more Adriamycin treatments. My dad at some point in our conversations asked if it had felt like a weight was lifted and I quickly responded without a need to think, “no.” Awesome to see it working absolutely, but I don’t think the weight will ever be lifted. There will always be maintenance drugs, there will always be scans, there will always be appointments and the wondering if its rearing it’s ugly head again. I am however empowered. To be showing signs of this ugly disease being brought down, the light at the end of the miniscule percent that I would make it, all have me in fight mode. Those results made me stronger. Now more than ever, I feel new hope. I never want to think that I should expect to be here another day, as each is a true gift, but I have so much joy in finally seeing that the possibility of overcoming some of the biggest fears in my life being stomped down.

For example, just the night before we had went to visit Santa in the mall. A super cute experience and we bought all the pictures (I know such a rip-off, but why not at this point!) We had such a fun time. I got home and the thought that ‘this could be my last Christmas’ was wrapping around me with long red and green ribbons. I fought it pretty hard and it left me alone. Getting this news made that fear crumble by my bed and now that I look back I smile. Like I said, bigger strength and new hope.

I know what is happening to me is happening for a reason bigger than me, my family or the army of team Nadine supporters. If you can’t see the miracles happening go back to my September blogs. It’s been a train of His hand showing up over and over and over again. I’ve been quite led to write my personal God story lately (testimony). About a month ago I thought I would write it so it could be read someday at my funeral, (yes, I did, don’t judge me!) but I feel like its something that I need to write now. Finding the blessings in the storm isn’t always easy while you’re weathering it, but I’m peaceful. The boat is rocking and I’m not moved. Good news comes and I am truly grateful and the strength continues to build. Not physical strength as I’m still up and down week to week, but spiritual, life-living, push harder strength.

I know that was long, thanks for listening if you made it this far. I have more days to fill in, but this for now is good. Going to take a nap for my last hour of Chemo #5 and then head home for a week of sleeping. Again no plans, so just planning to lay low, return to the doc Monday and then hopefully, God willing, we have not a single appointment for one entire week so we can spend the remainder in the mountains. And did you hear that? An entire 7 days OFF! It sounds soooooo good…

Psalm 9:1-2 I will praise you, Lord, with all my heart and tell about the wonders you have worked. God most high I will rejoice; I will celebrate and sing because of you.

Stay positive! Stay strong! Keep the faith! Let’s be the tiny percent together!

Weekly Monday News 11/16

Hello!! I'm a goofball and cannot follow directions especially when my tummy is growling and skip asks, “what would you like to eat?” Anything!! We were chatting and I was just saying how I wish the tech who did my first ultrasound could do it again because she was so thorough. Well, I start drinking coffee and was like ooooooooooh nooooooooo! I wasn't supposed to eat or drink!!! So I called Northside and we actually rescheduled it at the place I like more!! So now, the radiologist who observed my first study can be the one who compares this one! Fantastic!! So an extra day of waiting it is. That said… This is our week of nuts!

Monday:

10am echocardiogram at Northside Cherokee. I've definite had more heart palpitations the past few weeks. This will determine if my heart can withstand any more Adriamycin.

Don't eat or drink after midnight. Hahahaha. 

Tuesday:

Don't eat breakfast!!!!!

8:30am ultrasound on abdomen

10:00am dr B my breast surgeon check up

12:00pm dr may for IT chemo and blood work to see if nupogen is working! I had zero side effects from the first three shots which is slightly concerning BUT my bladder doesn't hurt now. 

Wednesday:

Off Day!! Likely my best day feeling wise for the week as the cycle has shown…

Thursday:

AC chemo #5 as long as heart looks good and the ultrasound shows a significant reduction of cancer

Friday:

8:30am IT chemo #11!!! Last time we get IT chemo twice a week! God is so good. 

This is a big week and a busy week!! I'll try to keep everyone updated as we find out things. I'm quite peaceful just soooo eager to get results!

Happy Monday! Today my little brother turns 31! He's awesome and hope he has a super day!! Grateful for an amazing time in Ellijay and now I can't wait to go back…

God bless. 

N

Peanut is 8

My little peanut turned 8! I am happy to say I was strong enough to plan a little party and make it through! The theatre was not crowded, I lysoled my seat, and there was no issue in me bringing in our personal snack bags. Movie was cute and heard lots of giggling. 

It's crazy to think that had we opted to not do intrathecal chemo, that I likely would not have made it to her birthday. Instead we just finished number 9 and have lots of confidence that it is working. I'm still asymptomatic, which is such a gift but we need not get complacent. We need to pray like we did on day one. We aren't out of the woods yet, maybe not ever. 

My blood work went crazy and decided to basically stop making white blood cells. Our main defense against infection. I'm not allowed to be around groups of people. If it drops another .2 ul my body may not be able to fight off its own bacteria. So we are trying the dreaded Nutrogen shot with bone pain and flu like symptoms. It works to put bone marrow into overdrive to create more WBCs. Been very blessed to have avoided the side effects thus far. Was able to get through a party! It's crazy. 

I think Monday is going to be a very revealing day. Tumor marker should be back, I have an echocardiogram to ensure my heart can handle two more rounds of AC chemo, and an abdominal ultrasound to compare to the one I had the day I was diagnosed. Lots of eagerness to know what is going on. 

I'm still concerned with stent-bladder-pelvic issues. I feel like no one really knows and they're all just waiting around to see what happens next. It would be awesome if we could wait for chemo to be over and then have surgery just not sure my body is capable of waiting that long. 

I forgot, another bit of good news is that we also only have one more week of two IT treatments! Number 12 falls on the week of thanksgiving and then we go weekly after that for 6 weeks!! Turkey week should also be an off chemo week! It'll be unreal to do this once!! Not sure I can even imagine!!

Ok. My body is begging for a nap. To all those who helped make Alana's birthday special, thank you. She had an amazing time and loves her gifts. She is in happy playland already!!

Planning to make it to the cabin tomorrow to chill out and get some fresh air and water! I am not sure how long it's been since we were up there but I'm guessing the grass is overgrown, the cob webs are everywhere and who knows what else we find!! But I'm eager to get there. It's one of the most peaceful places on earth.

Maybe, we can leave now. Hmmm. ;)

Off I go. Thanks for everything. 

XO 

Sitting in my Recliner

Just thought I would blog for a minute. I've done a WHOLE lot of sleeping and resting which is good and praiseworthy. Last night I actually didn't take something I knew would knock me out and I still slept 12 hours. Praise the Lord for sleep, I know a LOT of people don't get sleep out there - I've been in that insomniac club - shoot, I've been the leader! lol. But I guess when our bodies demand it, we get it. I do get the queezies off and on and food still all sounds rather disgusting. I've resorted to flipping through pages of cookbooks trying to find that one thing I must have. Realized yesterday all I had for lunch was coffee - I had completely forgotten to eat. Whoops.

Anyway, other than that, just hanging out avoiding sick people the best I can. It's the 7th day after chemo which is about the time numbers plummet, so I'm really not to be around big groups of people or around anyone who may be sick. Which is kind of unfortunate because I'm going to have to take some risks this weekend because it's Alana's and mom's birthdays and there is not much avoiding those precious times. Praying big for no germs to get a hold of me! Lots of hand sanitizer, no hugs, mask, maybe two masks, lol and maybe some lysol... ok this could get out of hand very easily but in all seriousness, CANNOT get sick.

Tomorrow is the 9th CSF treatment which is CRAZY!! They will check my tumor marker tomorrow, and I have orders to schedule the abdominal ultrasound and echocardiogram next week. Seems a TON longer than two months, but really I've only been on chemo for right at 7 weeks. Hoping to get some good news. Now that it's upon us my curiosity is trying to take over. Not so much anxious as maybe impatient. Just want to know so we can keep moving in the right direction.

Off I go, and I leave you with today's verse because I'm constantly reminded of just how great God's power is. I know I'm sick, and it's probably the sickest I've ever been, but I don't seem to be bothered by it so much. Every night my little Alana bear prays "we pray you put a little faith hope love and power into this treatment to make her better..." Trusting in His great power that that's exactly what is being done.

"Your power is great, and your glory is seen everywhere in heaven and on earth. You are the king of the entire world." 1 Chronicles 29:11

Weekly Monday News 11/9

Howdy! Chemo last Thursday has ripped it’s way through my body. Thankfully we had no plans (first since we started this) and I was able to pretty much rest and sleep it away. My distaste in food continues and I want something randomly different every day. Yesterday, it was ravioli, so we made it out to dinner as a family. It was nice to get out.

Tuesday is IT Chemo #8.

Friday is IT chemo #9.

We are back to the old schedule and expect to find out what scans are being ordered, blood work and when they may be done. I thought I would be super anxious, but really I am excited. It’s time to find out what damage this chemo has done to those nasty lil cancer cells. FINALLY!!

Imerman Angels

I thought I would blog about my new friend. People say all the time “you're not alone” and it frustrates me a little because actually yes, until yesterday I was alone. Leptomeningeal carcinomatosis is not a diagnosis most anyone has even heard of. The chances of getting it from your original cancer are 2-5% and it's rare. 

I'm not sure why, maybe a promise to a friend that I couldn't break that I would call LiveStrong, but I finally did. One day, chilling in my recliner I did it. They referred me to two different partner programs. Imermans Angels and then a nurse navigator kind of system. 

I first connected with the nurse, who did actually know of my disease and we talked a while about treatment plans and how I felt. I think for the most part we are good there. 

After a missed call and email from Imerman they were finally able to get me. She asked if I was interested in their services and I began to explain I wasn't really sure what I was looking for and was a little hesitant to find someone with what I had. She asked what it was and I was like it's really long, ready? I think I got leptomenin out and she finished it for me. I was shocked. Then more so when she knew exactly who she would pair me with, that they recently talked and she said the same thing!

Within an hour I had an email with both of our contact info. Last night Mary texted me for the first time and then we talked. Our stories were so amazingly similar if you don't count the years between. I think we both might have giggled, I might have even been relieved when we both realized we were getting intrathecal chemo via ommayas! This was so meant to be! Such a perfect connection. She's had 4 clear CSF results and I've had one, all of many I'm sure. Our biggest difference is that she had symptoms and I do not but we are going to stay positive and pray she can get relief. 

We have a lot in common and I feel like I've known her forever. Can't explain it. Maybe it's just knowing we are not alone or knowing what thoughts I've had she's probably had. That we both had the “best kind of breast cancer” and that it was tiny and all those things that lower your guard. It's still all so surreal.

So anyway, I have a new friend and we are going to be friends for a very long time. Going to be praying for sweet Mary and her boys and hopefully one day I'll make it out west to see her. Because that would be awesome. 

Long day of Double Chemo, DONE!

I would be technically done (could still be) with AC chemo. I just finished the fourth dose along with my 7^th Intrathecal Dose! I have felt a lot stronger this week than I had in a while. Usually the days leading up to AC chemo are pretty good, there were some very normal ones in there for sure. I rode my bike and threw a little football at the Etowah River Park Tuesday, walked ALL of Target Wednesday with a precious friend and SHOPPED, folded laundry and even had a little energy to cook on all those days! Even went out to Pure last night with my bike family for THREE HOURS! Those are some big accomplishments for being told last week that I’d likely have to be carried in for my 4^th round of AC! Instead I hiked up 4 flights of stairs. Yes, I did. You have to prove to yourself you are stronger than you think and with God, you have access to the greatest strength there is. Prayers are being answered daily and they’re allowing me to find a little normal, a little new normal, but good new normal.

As far as the kool-aid pee is concerned, there is a whole bunch of uncertainty about the status of the stent and if it is becoming infected. We are paying close attention but for now, no infection is coming back positive. If the new scans show nothing hindering the ureter I’m hoping to get that bad boy out.

Today was an incredibly long day. I think we were there from 9-4:30. Lots of prep, my port didn’t want to give blood again so we started off with an unhappy bang. Thankfully we got all settled in, blood work looked good and we were approved for take off. I’m not really sure where almost 6 hours goes, but it went. I did realize that today both of my ports were accessed at the same time. Kind of scary actually but it all went so well and smooth. Nothing I needed to worry about.

We made it home to another fabulous meal train dinner. Cannot thank the people enough who are going out of their way to bring us food. It’s a HUGE burden lifted and today was extra special, because I was starving and all four people were super satisfied! Meals seem so small, but on the receiving end, they are huge. Thank you.

Tonight we realized we had tickets to see Ben Folds. We saw him in Atlanta a year or so ago with the Symphony Orchestra and it was an amazing show. Likely one of my favorites of all time. So we decided after a LONG day of chemo I should probably NOT overdo it like I did at Taylor Swift and at the last minute a good friend said yes to go with skip. Actually, “would do anything for skip.” I did want to go, but it would take SO much effort and I just couldn’t see it tonight. Even though I still feel pretty good, you never know when that drop off is going to be. Plus, I would be starving already again and we would’ve had to leave!! lol!! Not sure what this is all about, but once I figure out what sounds good, I’m gonna chow down!

The outlook for the next 7 days is lots of sleep. Hoping there are little to no side effects and that we can get these scans done so we can do a little more celebrating. I know its not ALL gone, but it has shrunk significantly. I feel it. Praying about AC chemo #5 and #6. I have a bad feeling about #6, want to make sure we make all the right decisions.

Big love and good night! Thanks for coming along my journey... I hope to give you hope <3

"Our name means hope, never give up hope." - super nurse nadine

Happy Dance for Clear CSF

I’m sure you have heard by now, but the first set of pathology came back and my spinal fluid showed no evidence of cancer cells. I screamed across the hall to skip, danced in circles on my landing and we hugged and cried nearly speechless. I may not have been more thankful in my entire life. See the back story of this morning is only God. All morning I lay in bed off and on saying lazy prayers, looking at my bible ap, all the while God is on me like crazy. ‘Get on your knees for me.’ It took more than once of that running through my stubborn brain, but I finally did. Within a minute of me standing up, my phone rings, and its my oncology nurse telling me the great news. That my friends is the real God, the personal God who all he wants is us to listen for his voice. He is calling every one of us if we dare to look for it.

“Give thanks to the Lord, His love endures forever.” Psalm 118:1

PS. For the technical data people. This is AWESOME news, but we have to stay focused. We must have three results like this in a row to be officially deemed clear. Nothing in the treatment plan changes regardless. (12/6wks, 6/6wks, 2/mth, 1/mth) It’s chemo in the brain for life or until my body stops tolerating it, and praying that’s a never. J