This is War

I’m beginning to see the new war that has been waged against me, and how easy this one can take me down. I have not experienced daily torture of my mind, body and spirit all at once before. One, or two at a time, but never all three.

Physically my body seems to be recovering with small advancements like, being able to stay awake for the day, or walking into a store, making myself a grilled cheese, and today, walking around the backyard. It hurts, I can barely see what swirling color lies in front of me, I’m constantly walking a balance beam, but I must stay active. I must tell myself, “I will get better.”

I’m an instant gratification person. I’ve been a graphic designer for 15 years, I can erase and add color instantly to anything, which is why I chose it over fine art in school. A forty hour painting, as cool as it looked when I was done, just never 'did it for me.' So I face it all again when a walk around my backyard, it just doesn’t do it for me and my brat self takes over.

My brat self starts saying woe is me. Poor me. Interruption: I instantly thought of my niece Isla, “Aunt Nadine has no hair, aww poor aunt Nadine.” Okay, that made me smile. I do have a brat self, like when I walk around with an Oscar the grouch look, mad at the two feet I walk on, until I realize how blessed I am to be able to walk on these too feet. I know plenty of people who would do anything to have that ability back, and here I am grumbling? So I fight those things constantly. Sleeping for near 48 hours straight was unfathomable, and not being able to life a finger for almost 7 days ate at my soul.

My soul hurt so bad. I cried inside, and outside. I went to places I shouldn’t go and couldn’t escape to the happy places I knew to be safe. It was like a sick nightmare I was living whether I was awake or asleep. Woken up with anxiety in the middle of the night, to my happy go-to place I just made being bleeding over with darkness. Really, I told a friend today, I think I watched too much Harry Potter. I know this sounds insane, but even Harry Potter is too scary for me. I know, ridiculous.

So how can I type this if I have this war raging against me? By taking one tiny step at a time. I literally didn’t take over 1,000 total steps over 5 days, but on the sixth I did all 1,000.  Today, I was half way to goal. Do I fight the urge to just want to cry and get on my bike? Yes. But I am trying, hoping and remembering all of my friends fighting this too, and how we are all thankful to just spend another day, loving the ones we live for.

Do I suffer from PTSD from a stupid seizure? You know it. Every day at least 5 times a day I see it. I relive it. I remember thinking I was about to die because I couldn’t breathe. My friend helped me. We created a safe place to go to, passages of scripture to hold on to, and walked me through my fears until I could get through them and breathe. Deep breathing exercises are awesome and have stopped much panic over the past couple days. I feel my eye twitch, "am I gonna have a seizure" is the first thing I think. My right side hurts so bad from laying on it, "must be a seizure coming!" The problem with this is that you know what? One day again, I’m probably going to have another seizure and there is NOTHING I can do to stop it. The LM has voyaged deep down into my brain, into the meninges where things are more delicate than on that of the outer lining of the brain. Don’t get me wrong, it really doesn’t matter where in the brain cancer is, its not good, but mine, basically just came back worse. So not only do I fight off visions, and the daunting understanding of how advanced my disease actually is, I have to also FIGHT it. How? Not easily these days.

Used to I could do a little unicorn power dance, pray a quick prayer of thanks and happiness, getting outside, feeling the warmth of the Sun. Taking a walk. Now that hurts more than ever. Sadness tries so hard to creep in but I constantly fight the sadness with a little hope, and then a little more. I laugh it off laying there imagining I’m stabbing every tumor individually or erasing them from the MRI with a big giant eraser. I have to remember, “you still have options” while knowing it’s the same person who said, “unfortunately its in a part of your brain that controls balance.” I don’t want this war, I’m tired as all get out of fighting it, but there is this push, this drive, this angel, God, unicorn, whatever, maybe even a little Traci Offenberg voice, making me promise to not give up.

I’ve never experienced this part of the fight. I’ve never wanted to give up more than I did this past Saturday, but all these things, all the people cheering me on, all the short texts that blew up my phone of love, keep me going. My husband having tears in his eyes because he knows how hard it is and he fights his own war while watching mine is enough to tell him I can. I do it because my kids live in oblivion most of the time, and I don’t want them to go through this war of “wait, what just happened? I missed it” and facing a life of regret.

I’m fighting this disease now with every little piece I have left. I’ve tried to explain the last week the best way I know how. It’s been one of the hardest weeks of my life, ranking in the top 3 worst. I want Alimta to work. I want to live a life that God would be pleased with. I want to live a normal life of no cancer. I want a freaking miracle that sticks, not a teaser. I want a lot of things. But you know, in the place where I am at, I cannot expect those things anymore, I can only hope for those things. I must find happiness in the ugly, I most find hope in the hopeless, and trust with all my heart that there is a happy ending to this story. I know God is using me and teaching me and constantly reshaping me with new experiences so I can be ready to share my story, he’s done it for a year and 8 days that I know of for sure. I laugh sometimes when something I have never experienced before comes about, and my mind goes straight to, "well now I can help someone with that too!" So really when the day ends, have I met my challenge with grace? I don't know, some yes, some no. Do I have a smile on my face all the time? Nope. Maybe most of the time, I’d like to think I do, but not always. So really, it’s one giant deep breath so we can be ready for tomorrow. We have no idea what tomorrow brings, but bring it. I’m sick of the mind games, sick of the bed and the couch, sick of the swaying and sick of all the fear. Bring it, because you know what, I always win. Take that stupid cancer. I am going to win.

Team May at Your Service! 70 minutes total! (Not at Emory!! lol)

The last time I blogged, was about 2 days ago. I’m pretty sure today is Wednesday, 5 full days since I had the seizure. I’ve come a long way with the anxiety and stress of having another, but so far with a little therapist help, prayer and medication, we have been able to ward them off and keep me somewhat sane.

I will not lie. I had a mnor, itty bitty up, the past couple of days, but only with the assistance of caffeine. I’ve realized it gives me a good 20 minutes of conversation, and then I’m completely out again. Which is better than Saturday and Sunday, but nowhere where I want or should be by now.

The ride to Northside this morning seemed to take an eternity. I was madly dizzy, light was too bright and there was no way I could look out the window. I did however make myself a scrambled egg this morning, so take the wins as we can.

We slowly walked into the Tower realizing I should have brought the mommy stroller as I could not let go of skip. Funny, in a different way, I was in the same position exactly a year ago, but because of deabilitating pain, waiting for Adryamycin to work. Now we wait on Alimta.

I walked in and was immeditately checked in and sent to the back. No waiting in the waiting room for an hour. Pleases me to be called back at my appointment time. The lab assistant brought me to draw blood and boom, that was done. At Emory, another 30 minute to hour wait just for that. They walk me to the back and I see Carol, one of Dr. May’s nurses! I almost cried and we hugged and then Troy pops around the corner and oh my goodness, I was home. I cannot tell you how awesome it felt to be surrounded by this team of love buckets. They were my LM nurses when it all first happened and always just had positive experiences with them all.

They brought me to a room, we turned out the lights and someone reaches in and flicks them on! Everyone shouts “NO!” and Shelly’s face is in shock. She is Dr. May’s Nurse Practioner (I think) and a super serious love! I was so happy to see her too. Finally Dr. May came in and I almost lost it. I tried not to show the tears well up, but I’m almost sure hers were too. It was so awesome to hug her and know I was in the best place now.

We explained she really didn’t miss much, just going from clear scans and fluid to ugly scans and clear fluid. She did say it was no longer just on the outer parts of the meninges, but pretty well inside. She agreed there were a many number of things that could be attributing to the “drunkenness” and that it would be really hard to tell until we weened off of some things. Her goal is to get me off steroids first. VERY slowly over the next 4 weeks. If tolerated, she would like to drop the Keppra down to a 500 twice a day dose. She ordered a PET that will be done Tuesday so that we can make sure the systemic disease is still stable, and that 12 weeks was not a good idea. (I never thought so). We did labs and ran tumor markers and hope to get those in a few days. I will see her Wednesday to restage the systemic disease and figure out where I need to go from there. Lots of options for systemic disease.

I am going to shoot for an MRI of the brain before the next dose of Alimta Carbo to prove it’s working. It’s in a 4 week period, so we may get pushback from insurance, but hoping not. We know cytology is a fail as I had yet ANOTHER negative cytology result, making that three, techinically declaring me LM free. Funny, huh? I will see my radiation oncologist on Tuesday also to have a “hey what’s been going on” while I’m there for the PET. He’s not a neuro oncologist, but I’m hoping him and Dr. K can be buddies and do whatever they need to do. I trust Dr. Simon and love him to pieces so really this has always been my dream team, just something made me think I needed Emory. Misguided answers? Frustration? Who knows at this point. I could go back and read it, but what’s the point? The past is in the past, and we live day by day. Today was not the best physically, even scared myself walking as I’m so incredibly weak, but today was one of the best doctor visits I have had in a very very long time.

Skip and I swung by midtown to pick up CDs from my favorite medical records guy and headed home. We decided I needed caffeine and lunch and since everyone had Tin Lizzy’s when I couldn’t eat anything at the ER that is where we went. I PIGGED out! We sat outside in the shade, and it was open to the restaurant so the AC added a little cool breeze. We joked we were in Santa Monica except we couldn’t get out Tuna Tartare Tacos. HAHA! Instead, Southern Comfort Tacos and the biggest bowl of fried pickles, along with unsalted chips and cheese dip. It was perfect and I had enough alertness to make it home.

I barely made it to the top of the stairs, laid down, and out like a light I went, waking up a good hour and a half later in a puddle of drool. I needed that. I opened my eyes and with my head on the pillow everything is always still. I could look around, light didn’t affect me for that brief moment, and all was right with the world.

I’m now sitting in bed, typing this as fast as I can as my head begins to hurt again. Trying so so hard to be positive. It’s hard these days. We all have to face the end at some point, and I hope mine is later rather than soon. I want to keep helping others through their battles, I want to watch my kids grow up, I want to take care of my husband the way he takes care of me, I want to laugh with friends, and cry with those I love when they need my shoulder. Life isn’t always fair though. Taking every day as it comes, defeating anxiety and fear best I know how and remembering how blessed I truly am to have experienced the miracles we have witnessed already.

Just a little more God? Please? I know I don’t deserve anything, but #teamnadine sure does.

XO

48 hours of rest continues

Saturday and Sunday have merged and I don’t know what day or time it is most of the time. I’ve been on a pillow since 10PM Friday night, moving from place to place, wherever there is a good place to take a nap. I feel this pressure just pushing me down and to the sides. Even sitting I have a falling sensation that I fight. So instead I lay. I have slept for two days now. Three naps a day and 9 hours of sleep. Thankfully my stomach alarms when it has been a while, though not all food is appealing already. Seemed mighty fast.

The seizure thing still has an ugly hold on me. We decided we would try to sit at church (lucky I didn’t) but the car gave me so much anxiety I had Skip turn around. I couldn’t do it and we went home. I fell right asleep and he stepped up the daddy-mommy duties for the day. I was awful proud when I saw him baggy lunches for the week and he told me, “I’m learning from you! This makes it so much easier.” Hehe. I know.

People keep asking how I am. That’s a tough question. I have PTSD from a seizure. I have the aftermath and sore muscles from a seizure on top of  a very high dose chemo, and probably a few dances from Friday night’s party. I am more dizzy/unbalanced than ever, my head mildly hurts, my vision is messing with me and I looked up “leptomeningeal last days.” Can I tell you what a pity party I had. Stupidest thing to google but so many husbands posting about their wives and the sad deterioration that occurs.

I may add induced coma to my advanced directives because none of that looked tolerable for me. And if it’s anything like what happened Thursday, I can’t.

Anyway I am going to say prayers with my peanut and go to bed. I can barely write this as it is, but I just wanted to update. The ups and the downs and this is definitely a 48 hours of down. Hard falling down down down… Trying hard to do what I can, pray when I can,  eat and drink as I can, and respond as I can. Love you all and know I love to talk, so night night. Talk tomorrow.

Seizures SUCK

 I guess I am now ready to share my nightmare on Emory Street.

Thie first part of the day was going beautifully. Avery is doing her senior project about me and the journey cancer has taken us on the entire year and happened to be able to skip school and join me with a GoPro for the last day of it! She followed me around, took some cool shots and I sent them home for band practice knowing mom would be there soon.

I got a little quiet time and we were all finished. I pulled the GoPro out and my mom followed me out the front door with me shooting her a big number one chemo down. I felt good and no different than normal.

About a mile away I looked at Hammond and said, “AW we should’ve went that way!” Immediately following that comment my arm started violently shaking. The next part was filled in this morning when it ALL came back to me. I was yelling go to the hospital, mom, mom and then I couldn’t talk. My entire body at this time was in horrible clenching pain like a charlie horse had taken over your entire body, but a numbness at the same time. I saw her make a U-turn in front of a silver car and then we were in stopped traffic. My mom was screaming with her hand on my shoulder, “stay with me! Stay with me!” My head kicked back in the seat, I saw a lot of light and I began choking. I couldn’t breathe and all I could think was, “I’m about to die. Wow.”

Just then a rush of pain came through me and I had air. I was aware. I could see blue lights in front of us leading the way and coming to. So much so I had my phone and tried and tried to text skip. It finally made sense and went through and I was trying for my dad. The lady with the wheelchair at the ER was yelling at me to get out, that I just had a seizure and needed to “put the phone down.” Sorry lady, I’m going to text my dad.

And then, we went in. At this point I’m a freaking mess, barely with it, fearing it would come back again. I needed anti seizure drugs NOW. They got me into triage fairly quickly, when the lady attempts to tell me, “that wasn’t a seizure. You can’t be aware during a seizure.” I told her my friend is aware during seizures. I suppose because I have perfect vitals ALWAYS, we got dropped to the bottom of the list and it just so happened they now had a FIVE hour wait!

Better yet, there is no room for immune suppressed individuals. AT EMORY!!! I was like isn’t there a major cancer research hospital on this campus?! This is outrageous. I stalled labwork as long as I could to not be out in the wait area, but it was inevitable. We all wore masks and sat literally at the sliding doors. We saw all kinds of stuff, my favorite being a 16 year old boy rush back in after their shuttle never came and his anesthesia was wearing off.

I don’t want to imagine the pain but I’ve had soe real pain and I leaned over and just tried to explain how to “pass of the pain.” It wasn’t working and me and his mother started getting REAL loud about how this was unbelievable. I had already used language at this point I would not have ever allowed to come out, but you have to understand after 6 hours, the filter was GONE. Basically, they wanted to go through the ENTIRE readmittance process!! Well funny, the un-nice lady behind the desk I think realized she too had also said some pretty inappropriate things and poof after 6 hours of waiting, we had an ER room. Yes, you read that right.

By the time the doctor came in, it was 7 hours and I not realize what this took out of me. My legs felt like I had just run a marathon for the first time. My calves were SHOT. I also at this point cannot close my eyes without seeing everything happen over and over and over. I had been up since 5AM that morning and it was approaching 1. No sleep.

I had a CT scan and another hour later we found out it showed no bleeding and that it was in fact a seizure and that we are being admitted. At 4 in the morning we were woken up and moved to an interval room. Basically, it was the area people wake up in after surgery. Thankfully I told the girl I was immune suppressed and she found us a closed room. It had a recliner for Skip and bed for me. So at 5, with one hour of sleep in 24 hours, we got two hours of sleep. I got breakfast at 8 and we waited some more. AND waited more. Around 10 I start questioning the doctor coming and find out we are the last floor for visits. ARE YOU KIDDING?! So I start calling every 30 minutes, until I told them I had to leave by noon because I was having a 1 year diagnosiversary party and that if they didn’t let me go I was ripping the IV out of my arm. (So thought of my brother here!)

Apparently telling them you are walking out is a great way to get attention. Within minutes I had an AMA form to sign and guess who walks in after Skip went to get the car? The NP. I laughed. I had already told the charge nurse how horrible our experience was and they sat in shock, shaking their heads and confirming that my story needed to be shared with leadership at Emory. I already have a number and will be discussing this weekend.

I finally escaped and Skip got me home seizure free. Scariest ride of my life and as the flashbacks continue, just when I think I’ve moved on, it plagues my mind like the worst nightmare imaginable. I fell asleep in my bed with his mom who was left to babysit me while everyone went to set up for the party.

Thankfully I am kind of OCD and when I plan a party, I have detailed details on exactly what I want. I emailed it to some crazy awesome friends and they took over. I walked in at 4:30 and was blown away. It was perfect. Better than I would’ve expected, and just felt this surge come over me. I made it. The energy kept going, my promise of sitting failed, and I gave a good 200 hugs. The cake was unreal, the food was awesome, the people were awesome, and the band knocked it out. The photobooth and wigs were hysterical, and I tried to get a selfie with every person I saw. There were SO many highlights, but I will say, the ultimate was Madison getting the courage to sing “Something Big” in front of the entire crowd! She had been SO terribly nervous and I’d even let her out of it, but her best friends kept encouraging her and she did it. She faced her biggest fear and by the end, she was comfortable and telling them, “come on one more time!” It was surreal and awesome and one of the coolest things EVER. I’m so excited for her.

I still cannot wrap my head around what all these people did for me. Skip was a total rockstar, my parents stuck it out most of the night at the hospital, my “girls” made sure this party was going to happen. I’m so grateful. I still haven’t even gone through the book or gifts but I promise I will. Thank you will never be enough for the love that was shown to us and the prayers that gave me the energy to do it.

Today was a very hard day. The dizziness got worse and worse as the day went on. My blood pressure is lowest it should go. Felt faint and fatigued all day and had two naps. I’m in bed now and thankfully able to focus on the computer. I’m going to sign off. I’m so thankful to be here. Thanking God for another day, even if it’s not the best.

God bless and with all the saints we pray for some miracle that Alimta will work. I will be moving back to Northside next week as we’ve already corresponded. I’m so excited to go back. Emory has disappointed me too many times in the last month, and honestly, we don’t need the stress. Stress can trigger seizures! So calm is surrounding the Wall home tonight. Good night.

The Countdown to my Diagnosiversary!

9 hours 30 minutes...

Today is a VERY special day. I woke up around 5 in the morning and started to get ready for the day, went down and made some breakfast and sat in my recliner. I had brought down a book and decided to just turn to the last day. Funny it was entitled, “Last Day of the Year.” Today is the last day in the year of Stage IV breast cancer. I sat their in shock, unbelief, amazement and the joy of how long this last year has been. My family has crammed at least five years worth of things into one, and I’ve never been less busy in my life. It is so funny how priorities shift, commitments are carefully chosen, and time spent every day becomes so much more precious. Again, as I always say, none of us are guaranteed tomorrow. So why is it that we don’t live like that already? We wear ourselves out with the hustle and bustle, the drama and things we feel we “have to do,” when in reality, if you heard you had 3 months to live, you’d change what you were doing for those next three months. Anyone one of us would, life is precious and we want to spend every waking moment with the ones we love.

The other part of today that is so special is that it begins a new cycle of chemotherapy. I talked to the doctor today and these are the thoughts.

My LM cytology again was clear even though my brain MRI’s are clear. The thought is that the spinal fluid itself is clear with no free floating cells, and now we are only dealing with cancer cells that have adhered to the lining. We talked about my bone metastasis into the spine. Basically the Alimta/Carbo has that job as well and the bone drug I am on, Zometa, is actually to rebuild bone. It’s so crazy. She tried to access my Ommaya to drain off more liquid but it didn’t want to flow, so we will just wait 4 weeks to access it unless I show symptoms of progression.

Everyone is being super careful, but once again, Decadron was on my list. Wowzers. Not sure how this keeps coming up, but even my pharmacy filled Decadron the other day!!! They know also! Anyway, I just started fluids and Avery and her mom left.

If you haven’t heard about Avery, she is doing an inspirational documentary/ research project on my last year of fighting Breast Cancer and Leptomeningeal Metastis. She followed me through the clinic to basically give people an idea of what we do, and is going to be a rad video! Realized there is a LOT of waiting. She got to watch them access my port, access my Ommaya port, and start an infusion. I’m actually really eager to see this all put together. I love helping kids succeed and I know this is not only going to be special for her, but a keepsake for my children and one day their kids. She has no idea what a special gift this is for me.

I’m going to close my eyes for a while. Prayer Warriors, positive vibe friends, whatever it is you do, continue. We have beat this before and will beat it again.

• We need a miracle.
• We need Alimta and Carbo to do it’s thing and kill the cancer.
• Specific areas include the vertebrae of the spine – the entire spine and the LM tumors.    Annihilated guys, gone. 
• That the side effects are nonexistent.
• That my immune system works for me and that I stay infection free.
• That I continue to be active and healthy with my diet.
• Current side effects disappear – loss of balance, headaches, earaches, back pain and popping, and for intestinal tract to continue to work well.

I am overwhelmed at the amount of love I’ve been receiving through all avenues, and think that if people from the outside saw the love that has been poured in, they’d have a new perspective on humanity and what serving truly looks like. “Ask and you shall receive…” basically my family, friends and community motto and they don’t even know it. I would encourage anyone who is starting this journey of cancer to find 4-6 friends who are willing to be “on your ‘hope’ team.” This is your go to people for rides to clinic, people to set up meal trains, prayer chains, grocery and errand runners, people who can get your kids in a moments notice and plenty more. Let them be in charge and allow them to help as no one loves standing by and doing nothing. Soon your team will grow and grow, and you will be so blessed by it.  #teamnadine is 1805 people Facebook Strong and many, many more thousands strong across the world. Thank you to all of you, you redefined the word support this last year.