Disinfecting House is Hard!

Today I've cleaned. Let me say, I really don't remember keeping up with the house being SO hard!! Alana had been on her Meds for 24 hours so I washed everything, lysoled and put away a ton of awesome clothes that a friend passed along. Actually. I'm still not done. She's going to be so excited!!

The girls went with friends to the movies to see Alice. I would've went but I can't do 3D and plus I was awaiting doctor recommendations. They called and said they are calling in a new antibiotic and an antiviral to cover all our bases since skip is still battling shingles. Makes sense I guess!

Worn out and going to nap! Have a happy and safe Memorial Day weekend!

Happy Summer!

YIt's been an interesting few days with us all sick in our own crazy ways but we are making it through. I think I need to get back on antibiotics because this eye thing is not getting better with allergy medicine. I can barely open my eyes.

The last day of school was yesterday and I made it! In January after finding out the brain mets went wild, we cried with the kids trying to explain mommy might not make it to the end of the school year and was why we needed to pull them out of school for a while. And looky here, one day into summer! It's a miracle really. This entire journey is.

Last day morning selfies!

Thanks for continuing to cheer us on! Happy summer vacation!!!

Cancer vs. Shingles

So I was hysterically laughing last night because Skip was hurting from Shingles. It’s not funny, but it was!!! Here we are two people in pain and I’m wondering how long this is going to last as people say it can take weeks to recover from shingles. He’s been a super trooper and doesn’t complain as much as he normally would, and he still got up with the kids this morning! I wondered if it would be me but to my surprise my eyes were near swollen shut again, it was too bright and I had a pillow on my head that caused a headache because that’s just the way it is!

But I can continue. Because the dog had to see the vet yesterday from massive itching that doesn’t seem to have a known cause, so he got a shot. Alana is complaining of a shooting pain that causes her to freeze until it passes on her right side all the way up to her shoulder that I’m wondering if its something gastro or Shingles now too, which would be rare for any other family, but not the Walls. Rare is our life!

And Madison, knock on wood is healthy, but did have a 6 year old temper tantrum that I got beautifully on video only after she started laughing at the absurdity of it all. Funny thing is that the “mommy wins” concept is now realized in under 2 minutes, where at 6 years old it’s 2 hours. So there is hope.

I think that is it. Oh, my dad poked his eye on one of moms tropical plants in the backyard. I’m sorry, I just had to add that. Only my dad would end up in the ER from a plant poking his eye. I’m finding all of this very humorous for whatever reason, maybe its easier to laugh than to deal with it all. But I think maybe not. I'm just giggly.

Seriously though, Skip HAS to be better for our road trip as I don’t see him driving in his current state for long periods and we need to figure out what’s causing Alana to just freeze where she’s at until the pain passes. And though she is the BIGGEST hypochondriac ever known to earth, I’ve caught her having these episodes twice in the last couple of days. So it’s not a fake and if you have ideas, message me. Oh, and the dog got a shot so we are hopeful that helps.

Talking with the best doctors on how to move forward with the eye deal next chemo. Sounds like they may add steroids to the next dose, which I’m pretty sure we have done, and see if that helps. I don’t think they want to nor do I want them to mess with Alimta much as I feel way down deep, this stuff is kicking cancer’s butt. #positivity

Today I’m a little sore, but hope to get out and about a little more today. Last night we tackled bathing suit shopping for the girls which was uber fun and a lot less painless than I anticipated. My WBCs look good from yesterday, so all seems well with immunity so far. Just have to keep avoiding sick people and shingles. Buhaha.

Love to all. Come laugh with me!

Nadine

I just got from skip, "Cancer vs. Shingles, what the hell is wrong with you!??" I DONT KNOW!!! 

Do a Little Dance for Me

I think people are going to do dances after reading this! I’m trying...

We got fabulous news from the rad onc today. He said my MRI looked REALLY good compared to January scan which we know was much better than the February scary scan. When I asked how many were left, he shook his head, “like they’re way better, like gone-ish, it looks REALLY good” kind of look. We know there are cells from the cytology, but something good is still happening. I know we go up and down, and all around with emotions over here, and these last four weeks have proved to be the hardest yet, but I feel a little hope I haven’t felt in a long time. Not a lot, and I should be dancing around the streets shouting Hosanna at the highest right now, and maybe it’s just the fatigue wearing me inside out, but a smile and a hug will have to do at the moment. It is pretty cool though and maybe we’ll dance the night away with the kids… we will see.

The other super good news is that I am 7 days out from chemo, I have good white blood cells, low platelets but not disastrous and beside my list of chemo attributed ailments, I’m perfectly healthy. It makes no sense really.

Even better, last night I was able to take advil and drink some 4 glasses of unsweet tea and have the best ever 2 hours with Dani and her sweet Darren. They live all the way in New York and have family in S.C. and decided to make the drive to visit us for dinner when they could’ve just went home. Made my week and feeling good and laughing and talking at dinner and being out with Skip not on a doctor call was so refreshing.

Even better, better. I slept. It has been a long 7 nights but whalla I took Benadry, Ativan and more advil. Done, gone, out, see ya! I woke up feeling like I could get up and not roll over 6 more times! So I kind of helped get the girls out the door, got ready for the day and still felt surprisingly awake by 8:30. (I would’ve napped at least until 10:30 by then)

So it’s a good, no GREAT news kind of day! There is so much to be thankful for and thank you all for carrying us along the way. I’m excited to know I’ve made it to my next goal of going out west and watching Finding Dory!! I shed tears over maybe not being able to see the sequel of my all time favorite movie with my kids. Nemo was Mammo for Madison and we had a Mammo 1^st birthday. We watched it a good hundred times.

Trying to absorb just how miraculous every month is. Getting through the summer, and all the way to 9/9/16… a year isn’t too far off.

Don't forget about Eli! She got her pump with her 2 sheets of meds today she will take and be given! Pray she stays strong, it's intense, but I think she is going to be Super Eli as always and it'll be candy. Love you lady! Sending you unicorn positivity! Muah!!!

Keep Finding Strength

Well, I was just reminded that today is Monday again! I seriously had no idea. So here is the news.

I haven’t blogged because my computer has been dead and I’ve been hunting the charger for a week. Sorry.

Tomorrow is 7 days post chemo and will have bloodwork and follow up with brain radiation doctor. Next Tuesday I will do my third dose of Xometa which will be two weeks post chemo. Hoping by then that I am feeling well, better than last time.

I’ve felt super weak again, I sleep A LOT, my eyes are still swollen daily and there is pressure behind them now that makes them hurt when I make the slightest movement. Thankfully, it chills after a few hours of being awake. My appetite has gone to complete blagh again which doesn’t help. And other than that I would say we are good! It’s laughable at this point, gotta keep finding strength. It's a daily deal.

I did drag myself to church and a going away party yesterday. Probably the worst time for me to be around crowds, but it was needed. Got to see Spencer and all the amazing students “graduate!” It always makes me happy to see them up on stage and I dearly hope I will be able to watch my own some day. One of my biggest 'things' I don't like talking about.

We are still planning to go out west to see the Grand Canyon in a few weeks which I’m excited and nervous about. It’s a long trip away from doctors and we are strategically working it in between chemo treatments and hoping hoping hoping I have energy and am not sick to enjoy it.

Tomorrow is a very big day for one of my chemo sisters, Elizabeth Boronat. She gets super intense treatments every so many months out of the year. It’s a big beating on her body and family. Just love to ask you for additional prayers if you can for this sweet friend of mine and her precious family, it would be so appreciated! Here is her husbands post:

“I wanted to take this time to hijack Eli's facebook page and ask for thoughts and prayers as she embarks on her last chemo intensification. Today she has her labs, and pharmacy meeting. Northside Bone Marrow is thorough in their explanation of the "cocktail" of drugs my wife must take to keep her leukemia away. Tuesday begins a 2 week chemo blast. Then she battles all of the side effects as the chemo does its intended purpose. My wife is a warrior, and will battle with the same dignity, and ferocity that she battles any adversity she has encountered in her life.

Honey, the boys and I stand by your side and count the days when you are officially done with this chapter in our lives. Thank you to all that continue to keep us in your prayers and thoughts, and a special thank you to the sisterhood and bond that my wife has forged with a special group of STRONG WOMEN who battle this disease with the same dignity, and ferocity. Nadine Wall, Teona Ducre, Amy Lynn Bhary, Heather Miller, Jill McNeal, Julie Robinson, and others that have crossed our lives during this journey. Ladies you are true warriors.

Cancer has changed our lives, tears have been shed, expletives have been screamed, through it all Cancer has also taught us to smile, laugh, and add perspective to our lives. So instead of hating you cancer, we thank you. You showed us that we are stronger than you!!! Before each chemo treatment we recite (quietly) this little saying. "I'm gonna fight, till I can't fight no more, I'm gonna lay down bleed awhile get back up and fight some more".

We love you,
Nelson, Nathan, Ethan, Justin, and Elvis”

This lady inspires me daily to the point I’m hanging my head in shame for even complaining. Blessings to all…

Nadine

Puff the Magic Dragon Lives in my Eyes

Well, today has been interesting for sure! I woke up and could barely open my eyes to get to the bathroom. I look at Skip, “Are my eyes swollen?” I’m pretty sure he made some dreadful sound and I didn’t even want to look. I took a few pictures and sent them about. I got an appointment with my opthomologist – well, her recommendation because I couldn’t see her until Friday – at 2:30 today.

In the meantime, I’m racking my brain trying to figure out the correlation to everything. I emailed a picture to my oncologist and I received a call a few minutes ago that everyone agrees its fluid retention from the 1500+ cc’s of fluid I received yesterday. Which thank God I did because I woke up dry as a desert! Complete cotton mouth!! So I wasn’t sure why this conclusion makes a whole lot of sense and began a photo hunt since I photo-doc my life, and none of it makes sense. It randomly is worse some days than others and comes and goes as it pleases. It is SO weird. Regardless, I’ll still see Dr. Somebody today to look at it. I mean, I am the really weird one who gets weird things, right?!! Couldn’t hurt to take a look.

I scared my dad with this text this morning and couldn't stop laughing! Omg it's still so funny!

Other than that, I feel pretty good. Better on chemo that I did off of it last week! HAHA! That’s the prednisone talking, I know the crash will hit Thursday or Friday and that’s a load of fun I just can’t wait to invite you all to! See, I found my sense of humor too!

I’ve gotten an awesome amount of unicorn stuff and pretty much take some part of it with me wherever I go every day. It reminds me to free my mind and let go of some of the really hard things. I’m feeling a little stronger today as well, so that’s a plus. Yay for not needing to sleep since I’ve woke up today! That in itself is huge!

So I’ll update after I go to eye doctor – what him say its an allergic reaction. Then we are screwed because weeding out the culprit from my meds and vitamins and IV meds may be a wee little bit of a challenge. Until then, happy Wednesday!

With love,

Lavender Velvet Cheeks (you’ll only know what that means if you read yesterday’s blog)

UPDATE: My eyes look amazing, a little dry. Perfectly perfect otherwise and probably allergic to something... I used to be allergic to everything, even CHOCOLATE most of my life. Funny, I ate a quarter of a bar of chocolate last night... I wonder if that is the correlation... better not be. Going to start on Zyrtec and hopefully fix whatever this is along with my antibiotics. Fun times baby!

This is just my photo logging and trying to figure out some connection.

On 4/27 I got Xometa chemo and cytology taken from my Ommaya. (All is well)

On 5/3 the day before death feeling and eye puffy started I went to Ellijay and played in the pond… I remember touching my eye and thinking stupid.

On 5/4 my eye looked nasty when I woke up. Maybe an issue that I touched my eye?

This is about when I started feeling really sick as well though, and on 5/5 got fluids after the MRI and started a round of antibiotics. It seemed to help a little until that following Sunday 5/8 when I woke up with it swollen again.

I started my steroid 50-50-50 that morning.

On that Tuesday I was supposed to do chemo, but skipped it due to horrid fatigue, whatever is in my face, and a low grade off and on fever. We did a ton of bloodwork and nothing showed up and we continued with additional antibiotic.

I woke up Sunday morning 5/15, swollen eyes and still so much fatigue so Monday 5/16 I went to see one of my Dr. Daddies first thing, and he put me on a stronger antibiotic, plus I started 50-50-50 prednisone again.

I notice the pain behind my ears and up my neck was gone for the first time since radiation, so that is awesome sauce. I think it even helped with the nausea, something did!

I was approved for chemo 5/17 and got a butt ton of fluids, which I beg for because this stuff dries me up.

5/18 worst swelling of my eyes yet.