Wednesdays Dr Visit

Today was not at all what I expected. I had a horrible night sleep, even visions in my head and dreams are shaking and wobbling now. Who knows, maybe I had a seizure in my sleep. I woke up at 8:15 and thought “OH NO she moved my appointment to Atlanta at 10AM!” I tell Skip, we are out the door and arrive just on time. I do not look at anything along the way, but as e near, I’m feeling the feelings I don’t like.

Skip walked me in and I am zapped. No energy in my legs, hands and arms and I have barely enough energy to walk down the hall, curl up on a table and lay my head down. I picked drawing blood from my port if that tells you how bad I felt. They asked if I had taken Ativan yet and I said no, I wanted untainted vitals and blood work.

As soon as they did their thing, I popped one and within 10 minutes started feeling a little better. Dr. May came in and we talked for a while. Her theory on my visual wobbliness was the most sense anyone has made yet. I’m not really sure what she said, but I was thinking YES! That is IT! I just like figuring things out.

Can you guess what’s next? My vitals and blood work were beautiful. Perfect BP, temp, weight, pulse, and even my blood looks awesome. So last week I was pretty low for me on platelets at 70, and today they are 199? That does not even make sense. Red and white looked good to so now she is there contemplating chemo for Friday. This would be the 3 week cycle, it’s aggressive and I’m already freaked about having another massive seizure. She wouldn’t admit me, but I would stay for everal hours after the infusion was complete. I mean I could throw a rock out the window and hit the actual hospital, so I guess that works.

Lastly we have to figure out the Ommaya draw. Dr. Kesari wants the pressure taken yet no one knows how or even has the equipment to do so here on the East Coast. Plus, I’m scared, and she was also concerned, that it could cause an on the spot seizure just by messing around up there. SO, we are doing something unexpected. We have an appointment Tuesday with Dr. Dunbar.

I know I let her go a few months back, but she is the best here in Atlanta for what I have. She hands down agreed. We need someone here who can read these scans and help call the shots. I love Dr. Kesari, don’t get me wrong, but Dr. May’s part is currently stable, but my brain is causing mad havoc. We both need someone to explain this to us in a way we can understand and fight it. Every day that passes, my brain is worse. I’m sleeping all the time now. I can hardly stand for more than a few minutes and my vision disturbances are amplified to something worse every day. My brain is getting beat up by these tumors and we have to have another plan. And it WILL NOT be IT MTX unless someone can give me some overwhelming eveidence that intrathecaly it would be the best option. My research says nope.

Anyway. So. At the moment:

We now have two seizure meds, Xanax to tolerate their mean side effects, an antidepressant, and a stash of Ativan to stop seizures.

Friday will be where the fork in the road starts. High dose Alimta and Carboplatin will be given. It either works and my syptoms lessen, or it backfires and now I have this drug in me for the next 28 days. Basically at this point, what do I have to lose. I don’t think I’d make it 28 days without it, and my options are kind of dwindling.

Part of me says take the extra week and decide, part of me says get it over with. I don’t know anymore. I have no clear voice telling me the way to go. No one really knows, it’s all just a shot in the dark and hope for the best kind of outcome.

Well, I hurt, so I’m going to bed. Love you all and I’m sorry I haven’t responded to all of your messages and stories. I’ve been moved to tears by many of them, and just don’t have the energy or words. Some of you have shared deep things and how you’ve come through them. Thank you. Your love, encouragemtn, and prayers are always lifting, even when I’ve still got my arms crossed like a little bratty kid sitting in the corner. Just how I am right now.

When I asked my doctor for an antidepressant today, she explained she couldn’t believe I had not needed it before. But then we both giggled and agreed I’m a positive junkie. I’m just naturally positive. So I hope this works at least to get me back to a happy location. We shall see…

Dear God

Dear God.

Do you even realize what you’re doing? Do you have someone on my case making sure you know whats going on? How do things work up there? I’m a little pissed. It’s day 19 post seizure number one. Did you know it took me about 13 days to be able to get out and do something fun with my family? It was hard but I made it. Then on day 14 had another beautiful day, and did it! It was nice to be feeling better then BAM. Did you plan it perfectly so that evening I would have my second and third seizures? Awesome. Appreciate that.

So now we are on what? Day 4 or day 19? I will tell you, I’m ready to be put down. I wouldn’t let my dog roam about in misery, so what’s your excuse God? If I’m supposed to be here for some awesome reason, then let’s do this. Get me well so I can preach, counsel, educate, raise funds, be an artist, or whatever it is you so magically have for me here. If not, put me the hell down. This is torture to my soul and the sick part is THAT YOU KNOW IT! I’m obviously not very happy with you.

Daily. I walk around my house, inside, to the bed, bathroom, couch and refrigerator. My gait is shoulder with so I don’t slam sideways (usually left) into the hall wall. I have a way to get down the stairs safely, and honestly I haven’t named the spindles that I hold onto yet. Have you? They must be angels grabbing my hands because I haven’t fallen yet. Did you realize I take roughly 6-8 naps a day and then eat something, anything that sounds good in between? Oh, ya, I have to strategically take my baths now too as apparently the waves of the water gives me a boat sensation, and that doesn’t work for nausea real well. Maybe you could have me just lay on top of the water? I mean you can walk on it supposedly, so why not? Not to mention, getting out of my bath has always been a process all in itself.

You’ve made it so I can barely look at book, (ya, your bible even, that was dumb) for more than a few lines because my eyes feel like they’re gonna pop out of my head. And honeslty, I don’t even want to read about your stories right now. You’re not giving me promised peace and comfort and you HAVE given me more than I can handle! I’m over it! Live up to what you teach.

Oh, and my eyes can barely handle this laptop anymore and I type staring at the keys. I normally can’t proof it anymore so sorry for any of the typos. Oh, and just so you know, my favorite thing to do over the first 14 days was making Shutterfly yearbooks, but now you’ve ripped that from me too. Was it too much to ask to not makes my eyes cross? I fought it super, super hard yesterday, as I so want to get these done for my babies to have and cherish forever, I moved and selected about 700 pictures, and poof, my computer did something weird and all my selections were gone. I cried, but you knew that too, right? Or are you on vacation? Everyone else around here was.

Did you know I got an aggravating note that said my neuro wants to now up my dose of Keppra on top of adding another seizure drug? Sorry. Not going on something else. I already feel side effects from 3-4 different drugs, all overlapping, in a person whose only been on Synthroid and a couple of Advil most her life. Let’s look at this!! I’m going to list the ones I have in case you misplaced your list:

Keppra: psychoneurosis (I have no idea what that is but I probably have it), drowsiness, weakness, nervousness, headache, abnormal behavior (no way! Not ME!), hostility (Can I jump over the counter and punch the receptionist in the face? Maybe a little), anxiety, depression, agitation, aggressive behavior, fatigue, irritability, mood changes, constipation (I added that one because it’s a beauty for me)

Prednisone: Aggression, agitation, anxiety, blurred vision, dizziness, fast heartbeat or pulse, headache, irritability, mental depression, mood changes, nervousness, trouble thinking, speaking, or walking (Funny those are super similar to LM symptoms. Thanks)

Alimta: Low white blood cell count. (This can put you at increased risk for infection. So I guess I can thank you for keeping my family healthy so I don’t get sick.) Low red blood cell count (Anemia), Fatigue (There it is again!!), Nausea and vomiting, Constipation, Poor appetite (That is an inderstatement. Food sucks)

Seizure: fatigue, severe headache, and body aches. Sometimes there are speech and vision disturbances. (Look more side effects! YAY!)

So as you can see God, I am basically a disaster. The last 19 days have been miserable, and I’m just sleeping them away. I just want to cry and then find I can’t even do that as I’m too angry. I’m supposed to stay “stress free” so for maybe the first time ever, the voices are quiet in the house, the lights stay off or I cover them with a headband, I cannot watch movies and talking even tires me out. I have every side effect listed above on top of the disease itself. So add in the unbalanced gait, visual disturbances with light and contrast, the head and back pain, and the anxiety that comes with cancer itself, and we got ourselves a giant perfect storm.

Well as I’m sure you know, my fingers are actually too tired to finish typing this. I have no idea if this even made sense but there it is. That may be how I’ve felt off and on for the last 19 days and honestly, there is probably more that I cant remember, because you’ve jacked that up too. Memory? None. I’ve lost about 16 of the last 19 days. Not even joking. I couldn’t for the life of me figure out what we had for dinner the night before and it kept me awake. Guess I should’ve been praying but with all these side effects I’m kind of distracted.

Anyway, I just wanted you to know if I’m cranky, irritated, yell at you, throw a pie in your face, it’s not really who you made me to be. I’m not sorry though if I do, because I’m still really, really angry. You’ve allowed this demon of cancer to live inside me, and it is fighting to get out and I’m right there fighting to get it out too! Where are you? Watching from the sidelines with a stupid grin seeing how far we can go? It’s going to leave my body one way or another. Prefer it be now so I can enjoy watching my children grow and grow old with my husband, but if it’s your will for me to be in heaven instead, then just hurry this up and get it over with.

Thanks in advance.

Nadine

PS. You suck.

Seizure 2 & 3

“You know the moments when you fall to the ground, but you are stronger than you feel you are now. You don’t always have to speak so loud, just be as you are.” –MP

I had another seizure, maybe two in a row. They are simple partial seizures that only attack certain areas of the brain, often leaving the victim aware or even awake.

Last night I was completely awake. I just started feeling odd, like I might pass out or fall over if I didn’t lie down. I had a feeling I’d had before and thought I was about to have a seizure. I grabbed the rescue Ativan and threw it under my tongue, took my dose of Keppra that was due in 15 minutes and walked around with my friend who is telling me all is going to be okay.

We unrolled Madisons gym mat on the living room floor and I lay on it and began shaking uncontrollably. I did the breathing exersizes me and my therapist went through and then I had them on things. Yes, I could talk. Blanket. Pillow. Antoher Ativan and then finally, “Skip you’re going to have to call 911. It’s not stopping.”

About half way through the call it stopped like a light switch. I’m not shaking, wait. Talked too soon. About 10 seconds and it was full on back. By the time the EMT got there it started subsiding. I was shaking, biting my lip, check and smashing my teeth together, and the back of my neck was in a giant knot. It subsided again, and never came back.

I hopped on the ambulance express to Northside Atlanta and was seen, bloodwork done and back, and out the door and at my home a little over 4 hours after I left my house. That should put a smile on your face after knowing how the last one went.

Me and Dr. Funk, the ER doc that night, relived a year ago and got a bunch of good laughs in. He knew the ER nurse Nadine and we just talked a while. It’s nice to have that when your husband still hasn’t arrived and he goes to get his personal cell phone so I can check on him. Seriously!

He joked we would write a prescription for both girls that would say something like:

Alana, No loud noises, no bright lights, quiet voices, no whining, and most of all no fighting with sister. Thank you, Doctor Funk.” But then we giggled and realized they probably wouldn’t buy it being signed P. Funk.

He knew I was feeling fine and didn’t need to admit me. He said we did everything right and how he would’ve. He gave me a booster dose of Keppra and sent us on our way. I am sure I was out on the way home. We ran into Scott Levy SSPD, as he was holding down the fort at NS. So proud of him and so grateful to see a friendly face. We took pictures in his cop car and went on our way.

I don’t remember anything after that. I walked in the door, smiled at Darren on the couch, (such an extraordinary friend),  and woke up around 7:30 in my bed. I guess I slept awesome though I don’t remember.

Today I’ve moved from the bed to the couch to the bed to the couch, much like 2 weeks ago today, recovering from the last. At least this time I was on a mat and didn’t get mad bruising from being in a tight place! We need a win here! I’m gonna close my eyes again, but wanted to send a quick update and get it documented before I forgot the details.

Thank you Melanie for giving me the tools I needed to conquer this.

Darren, thank you for sleeping on the couch last night so our kids would feel safe at home.

Thank you Kristin for being on top of everything. From getting what I needed, to helping me breath and keep calm. For praying the best most beautiful prayer over me after I wouldn’t let you move the Jesus sandal.

Thank you Skip for looking into my eyes and asking me what the best part of Howard Finster’s garden was. For keeping me calm and getting there as fast as you could so we could be together, laying together on that little ER bed with your arms wrapped around me, keeping me in the safest place here on earth.

Another seizure down, maybe two, totaling 10-15 minutes. Not as scary as last time, but they are traumatic. You are living in an altered reality, a nightmare, and can only do so much. Everything hurts, you wonder when it’s going to end, and you continually fight the urge to let darkness come over your body.  It feels like it’s pulling me over to a full seizure and I just kept refusing to go there. It is showing me how powerful the mind truly is during moments like these.

Need to grab a bite, so off I go. Chill day of couch, bed, couch, bed… love to all.

Weekly Monday News (Bold) & Pooday

WARNING: May not be suitable for mature audiences, I welcome immature audiences, and may be terribly displeasing to the eyes. You were warned, don’t look if you don’t like icky stuff. (Though I will throw pictures at the bottom)

I just had to blog about today! I woke up my normal self, stumbling through my house, eating breakfast when the door knocks and I receive a package stating my Alimta chemo I had last week was not covered. Not only did they enter the wrong date, but it was a WEEK AFTER I actually got it! So no one there even confirmed if it was a go before giving it to me! Holy smokes, the Emory attachment continues.

To make matters worse, I called AND emailed through the portal and have received ZERO response. For now I’m going to chill about it, but it’s just one more thing. They put experimental on there as well, and we ALL know if you do that insurance won’t cover it, but the thing is I’ve done TWO ROUNDS OF THIS CHEMO AT NORTHSIDE ALREADY!!! Someone please save me from the agony.

Anyway, the rest of the day was a hoot. I gathered my wobbles and took a drive to Northside Cumming with Jen and Madie, my cheuffers for the day. We were on a poo mission. About four days ago, I decided to add Turmeric back into my vitamin supply. I was told not to take it while I was on Adrymacin, but that is long gone and Turmeric kills cancer. It’s a fact. What I DID NOT KNOW was that turmeric kills intestinal parasites. Now, I do not have confirmation, but by the mad googling I did and research linking cancer and intestinal parasites together, let’s just say my pics matched their pics.

The only thing I could not figure out was what in the world these little clear jelly looking sacs were in my stool. They looked like fish eyes!! So off to see if fishes could hatch in the intestines and live! To our horror one man survived a GIANT fish in his intestines and there is a video of doctors removing it!!! So I found a great picture of what eye’s I found!

Now, people ask, when have you eaten raw or undercooked meat or fish? Are you kidding? For almost two years my husband and I ate sushi EVERY Wednesday night and sometimes another night too! And I’m not the little fried yummy yummy girl, I like a big chunk of sashimi and nigiri!! The more raw the better! On top of that, we do have a place in Ellijay and well water has been tested, but you can still get a parasite even from kayaking a nasty pond. Oh yes, I’ve done that too. Apparently they can live and fester inside of you for YEARS and you’d never know it. Well if this comes back, I’ll KNOW it’s been for YEARS because I’ve seen poo like this and blown it off as constipation and inflammation, until I realized I wasn’t really constipated this time. Hehe.

So we grab the biggest coffee possible at starbucks and head to the clinic. I grab my bag and we find the restroom down the hall. My, what a funny poop catching seat we have here. Pee, all I keep doing is peeing. At this point I’m like okay girls I need some help. What kind of meditation music do we have? Nature. Okay so crickets, birds, wind blowing, YES, another woman walks in!! I’m dying laughing at this point and there is no squatty potty to help. I manage to make this work and then the real adventure begins. I unscrew the first tube and this little tiny itty bitty spork (yes SPORK) is attached to this thing. I have to fill 5 viles (and of course it looks hardly anything the same) with an almost microscopic SPORK!

That’s all great and dandy until I realize it’s only going to fill three! Here we go again, “OOH! My poo has glitter in it guys!!!!” “Of course it does, you are a unicorn!!” Another person comes in. I think Madie is mortified at this point and it makes me laugh.

I finish my last two viles, trying to scoop up what like like mini worms, but for all I know it’s shredded chicken at this point! Oh the belly rolling laughs. I bring it back and off we go. I never thought I would literally not care about what people think this much ever in my life. I was a very very VERY shy child who was embarrassed at the simplest thing and I’m now yelling over stalls to ignore us, that we are just have a stool sample party.

I guess I won’t know for a day or two and I have a PET scan tomorrow and Zometa infusion on Wednesday. I meet up with Dr. Simon tomorrow as well and Dr. May again to review everything Wednesday. I seriously hope this Alimta is working, and the detox of paraties or whatever that was continues to leave, and that my body can go back to a healthy, immunue system, state. I pray my liver is healed again, I do feel little pains again, but I am hoping it’s all interrelated and that when we add Opdivo, immunetherapy, it ends up being the exact right timing! Need my body to fight for me, and it seems as though we are beginning.

Lastly, I hear liver enzymes were up, so I go to my beet juice. I myself, made my beet concoction and even passed the love forward to a friend. My friend passes them to me, so as I am able, I will pass them down to others as well! So turmeric, beet cocktail, chemo and steroid DO YOUR THANG! Prayers, DO YOUR THING! We got this baby! I’m feeling awesome tonight. Slight wobbles since lunch, massive amount of caffeine blast, a little advil and Xanax and we gots a cure! Not really, but everything today came to a good end in the truest sense of good.

I sit here as Skip continues to ROCK OUT the laundry, keeping it up better than I can! I am so grateful to God for relief from head pain, back pain and wobbles at this very moment. I know it’s only for a little while, but I will TAKE IT! Yay for a good fun day!

Now don’t scroll any more unless you’re ready to be scarred.

I'm warning you....

Nasty!

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