Unicorns and Rainbows

It is Friday! I had NO CLUE what the day was all week. I just went with Tuesday. It seemed the likeliest but guess it’s the weekend now! That means two volleyball tournaments, Alana Saturday and Madison Sunday! I’m feeling really good even after the Xometa! Not AWESOME but very good. I had a Starbucks Iced coffee yesterday and shopped with a friend and I will tell you that is one of my happiest places – shopping. I had a good amount of energy for 3 hours or so, and bought my kids a crazy amount of $5 and Below junk for Happy Summer Day. No, it wasn’t an actual thing, I made it up so I’d have a good excuse to spoil them. I had so much fun in that store I laughed the entire time. I felt like a little kid and then, when I found the unicorn section, it was over. I have collected some pretty cool unicorn things that I have to decide creatively how I am going to use them. Because you know, I am a unicorn, right? I’m giggling up a storm, I know not everyone poops rainsbows, but, I do. Yep. It’s true.

So today seems to be another good day! I had 7 hours of consecutive sleep which is unheard of these days and Xometa still seems to have not caused any issues! Skip said my port looked weird last night so I sent my Doc a picture and she just called. Said it looks fine. Probably bruising which is why it was green, and the scar stretching as I continue to lose weight. She said , Oh my God, I’m not sure I can type this, but some peoples have come through the skin!!!!!!!! I was like WHAT!!!??? So she told me what to watch for. Gag. I don’t even wanna go there. Ports are like teeth. I don’t want to know about them. They gross me out. Don’t mess with them, touch them, blagag! Lol.

Okay, so I’m not a real unicorn, its just my favorite animal. I plan to see one today on a photoshoot we are planning. I was inspired by DeDe’s photos and thought they were so beautifully artistic. I’m not a huge fan of my bald shiny head, but these were cool. Made me want to embrace it a little. I know when my hair finally grew back last time, you know I didn’t want to look at pictures of me with no hair. I don’t really know why, I didn’t think I was “ugly” but it repulsed me. So unfortunately I’ve taken a LOT of pictures this round with baldy head, but hopefully with this fun photoshoot I’ll be able to look at them later and think beauty.

So, nothing is moving or doing, I’m just contantly thinking positive thoughts, praying, clearing my mind, taking steps claiming cancer cells are dying, and letting the meds do their work. I have 6 days until scans and I’m going to love every one of them!

Remember if you have allergies, or anything weird going on where you think you could be sick, stay AWAY! My White blood cells look good at the moment, but I desperately am looking forward and hoping and praying I get a relief week. It’s been a long time and I’m super excited.

Hope everyone has an up day, and if it’s down, don’t stay there long. Jump on a unicorn and fly into the clouds and rainbows, where God sets his reminder that He holds true to His promises.

Tappin ommaya Grabbing Xometa Meeting another Superwoman

I'll update here...

On our way to Dr May in Atlanta as I like getting my Ommaya tapped there better. I have serious anxiety about tapping it now anyway, but I think I have some serious ad versions over the things that happened in Forsyth. Depocyte, I just shudder when I hear that name. Say it again...Mufasa! Okay Lion King just distracted me. I just put a blob of numbing cream on my ports. I couldn't find my Xanax OR Ativan so I'm a bit of a struggling mess. I already took zofram and that's not enough to hold back the nausea at the moment. Chomping on Altoids... Eek. Just looking forward to afterward. Going to be a cool morning. Meeting someone special:) stay positive Nadine...

Port accessed by my Cumming port nurse and that was a hoot. Laughed like. Maniac. Knees up and now they are making my tables ready. So please pray my ommaya works. Please oh please give her fluid!! And let it be clear. Please?

5cc of spinal fluid sent and obtained with minimal fight (I got a shot of Ativan) and my 1 minute of dread is over. I would love to expect miracle cytology results and I know as I blabber mouthed about how they'll be great I know Dr May didn't say a word. It would be a fun miracle for her too. Haven't been in this place in a long time. I really love the people here too. 

For old time sake we got a pic...

I spared you a needle picture as I wasn't sure I could do it. Hurts a little but nothing I can't deal. 

Xometa in and flowing. Going to pray for no side effects, maybe a nap!

Off we go. Got to visit some tower nurses and favorites so that was a ball. Now, I'm a cross the street awaiting to see my favorite Dr. Daddy, his team of beautiful women  and meet my very special friend Hollis. 

So we met!!! I'm thrilled. It was a joy to meet Hollis, this parallel traveler who makes me laugh and totally gets it all. Shoot. We did whole brain radiation at the same time! So glad Dr. Namnoum made us talk that day! 

Then Dr. N popped in between surgery. Oh the beyond love I have for this man. We talked a lot about new drugs and what's been going on and then he had to  swoosh back off. Love visiting my APS family, my favorite Cindy and missed our Allison. Funny how he talked about Opdivo also, just have to trust and see what all these scans show. 

Love. So we are off to lunch, Flying Biscuit, with my numero uno love. He's so beyond amazing and dealt with my crazy today like a rock star. 

Cytology results in a few days.

Went home and took a nice long nap, pulled dinner out of the crock pot and got the kids to volleyball. Skip scored a ride on the greenway and I did my first yoga class. I mainly had to do my own thing, like 50% Childs pose, but I felt muscles that had not been used in a long time. 

I only did thirty minutes as I'm still fighting  nausea land but headed home nor for a good night sleep and hopes to zero Xometa side effects :)

To all a good night!

Lil News, Lots Gross, More hope

Just realized I didn’t do Weekly Monday News!
·      Xometa infusion tomorrow. Chemo for bones. Every 4 weeks.
·      Access Ommaya and test spinal fluid tomorrow. Been over two months.
·      PET scan May 5.
·      MRI of brain and spine May 6.
·      Lots coming up!!!

Yesterday was a super cool day that started with a bike ride, did lunch and slide sorting with dad, and for dinner I splurged and got a #1 at chick fil a. Yes, I did and it was FABULOUS with lots of ranch. I have not done that in a long time, and now I think I will need a chicken, egg and cheese biscuit in the near future now.

I woke up ish and nauseated this morning (probably the sodium and grease) and ended up going back to sleep. I think part of it is nerves, but I’m trying not to look at tomorrow, just today. I have to have my ommaya port accessed for cytology and I get my second dose of Xometa for the cancer in my bones. We determined Xometa was the culprit of my worst side effects on cycle one, and though she says sometimes it’s not as bad the second, it’s something I am NOT looking forward to and HOPING is true. No side effects please. I’m such a kook, I just called to see if the nurse would call in litocaine cream for my ports, because the least pain as possible will help me be a better patient! HAHA!

Today I am hanging around, hoping to run some errands and see some fun friendly faces and tonight my goal is to get the family to the bike trail we went to yesterday. Being only 10 minutes away from my house, which excited me to no end, I think it’ll be a good way for me to do some exercise. Walking is SO much harder and I just don’t have it, but when I’m on the bike, it’s second nature. To the point I’m way more balanced on a bike than I am standing on two feet. It’s so bizarre but amazing too.

So, my blog ends here. IF you want to read gross things, keep going, if not, you should stop here and know I love you and appreciate all the thoughts, prayers, encouragement and positive vibes… don’t let curiosity damage your eyes. Lol.

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I'm serious, turn away if ingrown hair, black things making their way through your skin or poo is already making your stomach turn.

I’m doing this for journal sake. Again, if you don’t want to be grossed out, please don’t read this. So I have a weird theory that my immune system DOES work against cancer but I’ve had infections and stomach issues since August, my body has had to work on instead.

See, two nights ago, where I was getting positive energy and praying and all sorts of just coolness, I had noticed a spot on my groin area a few days before that looked like an ingrown hair. I couldn’t help but pick at it. It must’ve been there for a year (my groin is always swollen by the way, something no doctor has been able to explain yet) because inch worm was all I can say with a hair longer than any hair I’ve had on my head in the last 6 months and not one, but like five. I’m telling you, I could almost feel myself feeling better instantly.

Grossed out yet? TMI? Buhahaha. I really want to document this! Sorry. That was the worst.

So last night, I’ve had a black spot that appeared around October in my belly button from the hysterectomy I assumed. Sent the picture to a few doctors who said nah, likely a stitch or nothing to worry about as I was convinced it was black cancer coming out of my stomach. Yes, I googled it. So as always I pick at it and it randomly comes out and I’m like WHAT! No way. So weirdo me is like “lets get the kids microscope and see if we can tell what it is!” I’m like PLEASE DON’T BE A BUG OR SOMETHING THEY DROPPED IN DURING SURGERY!! ! Lol. But we couldn’t get the fake microscope to work and when I squished it onto the slide it wasn’t black anymore. Think I should take it to my doctor?!! Lol. I’m dying to know what it is.

So two purges of weird things on my body and a night of no pain in my right groin, leg, or foot which is seriously abnormal. Normally you cannot touch my shin, rub up against it even, without me screaming like you just kicked me. So I’m definitely curious.

Lastly, these drugs make my stomach not move for days and all of a sudden after a bout of non-stop poo, I am regular and my stomach is happy and I’m in shock. I sent an email to Dr. Kesari in LA yesterday responding to his follow up and told him I think I’m healed with a smily face and a picture of us riding bikes. He was glad. But I am serious. It's all very cool and very needed. Hope. <3

“Then, a sparkling white light filled the parts that lost the diseased matter with “health”.” –unknown.

Expecting miracles.

A Mighty Fortress is our God

Howdy. It’s been a little while. I figured no one needed to hear my negative cloud of sadness and ash, so I took some time off from blogging for a minute. I really had nothing nice to write, so you are welcome for sparing you the misery. Too many things were aggravating me, building up negativity and adding to my stress, things that were completely beyond my comprehension. Like huge question marks of “are you kidding me? What are you talking about things?” Once I realized the devil was, how can I say this without cussing, jerking with me, I realized it was time to seek some peace.

I started with a good online streaming of NorthStar Sunday morning with the family which was exceptional as always, I downloaded A Mighty Fortress the last worship song, and listened to it on repeat all day. I prayed a lot but nothing. I still felt like things were flung my way, with articles about cures, and garbage I just didn’t want to see. Okay, it was so bad that I finally told skip that if I had to watch one more video of prince playing or covering, or anything about Prince I was going to lose it. I had kept quiet in respect, but the frustration came out like projectile vomit. I felt bad, it is sad, but I had nothing nice in me.

But then a friend who helped me translate my spiritual letter, came across a notification while she was thinking about me, just under a reiki healing thing. I joined the group (she doesn’t even recall being in it) and I made my request. The funny thing was it was at 8:00. Well, CDT, but I didn’t know that at first. So I went upstairs and fully started letting go of things that bothered me. I soaked in my tub with my piano music playing on shuffle. Until, it decided to change. Good, Good Father comes on and then after that another and then A Mighty Fortress. It was an awesome prayer time and I’m rarely on at 8.

We said prayers right around 9 with the girls and off to bed they went. Skip and I talked for a long time, and it was the first time I really just explained everything I was feeling and angry about. I was glad when he completely understood. I started feeling my happy come back and my positivity boosting. Maybe the Reiki thing did work? All I know is that I sat there and said, “well, when this miracle comes true, what is my purpose. I need to know why God is going to keep me alive. To do what? What will be my calling?” Skip agreed, there would be a reason, and he said for him and the girls. I know that is true, but I feel like there is more.

I fell asleep, deeply after 2 days of not, and awoke with a better feeling. I still didn’t want to get up, but I finally did and we got the kids off to school. I felt okay, not in too much pain and I decided that we needed to go for a bike ride. Skip had a break in meetings and so we loaded up. We even took Jax in the little dog carrier we have never used! It was so beautiful. Almost brings tears to my eyes as we write. The Etowah Greenway is finally connected to Heritage Park and we just rode. Slow and steady with Skip saying 1,000 times, “sit Jax.” He finally got used to it and I couldn’t stop smiling. It was lovely and I just felt like I was breathing air for the first time this week. It’s been hard to even take a full breath.

We head home and I’m just grateful. Thankful. Today marks 3 years since I was diagnosed with Breast Cancer. It too came up on Facebook this morning trying to ruin my day, but instead I was happy. Three years fighting this junk and there’s no giving up here. May have some really down days and some really up days with a few other kinds in between, but this is a battle that is far from over. I’ll never forget the doctor reading my report telling me how serious it was and me just smiling with complete confidence that we were going to be fine. Some serious storms have pulled us under to near drowning, but we fight for our life. I have eternal hope, that will not change, but I want to be here for my children and do whatever it is I’m supposed to do.

It's Prednisone's Fault

So I was expecting a decline in performance today, first day off Prednisone. Last time it was like someone had drained all my energies. Today, 2 days after chemo, I’m okayish still.  Had a huge 4-6AM insomnia/starvation/dehydration moment and was up for a while, and I feel the weird, but not the flu like symptoms (Pretty sure it’s the Xometa now which I get next week so we shall know if that is the culprit). So, I took it easy after a long day yesterday and slept in. I even made the kids lunches for Skip during my early rise cereal craving to try to help his sanity.

We went to the zoo yesterday, as I knew I would feel good the day after chemo, I always have. We brought my mommy stroller and that helped a ton, and gave little Alana and Isla some chill time too when they needed it. The park was clearing by the time we got there and 3 hours of fun was to be had with my two girls, two nieces, mom and sister. I posted a ton of pictures today on facebook, yes, I even felt well enough to tote my camera around!

We came home and we ate leftovers from what I had made the day before and got everyone to bed early. Skip and I watched a movie and both laughed uncontrollably, keeping us awake and cheerful. But then when the movie ended, it hit again, those darn emotions. It was Paris.

See the movie referred a few times to Paris and Madison and I earlier that day had talked about Mexico and if we would still go. I told her, I’d probably rather go to Paris, and Rome as Italy was by far one of the most amazing places I had ever been to. I told her that was my dream at some point, to take each girl to Paris when they graduated high school. She said she knew people that did that and we quickly changed the subject as I think we both started getting teary eyed.

So after the movie I blurted out, “lets go to Paris…” and skip starts looking at plane fares and I start tearing, more like gushing. Streams of too many emotions came pouring down my face, as they are now, and I couldn’t even tell him why and it was awful because my head went from Paris to way too many other places - fast. Whew. So I cant write about this anymore.

I blame Prednisone. That is my thing right now. It's all Prednisone's fault. hehe.

Now Alana is home, we are going to do homework together. I am very thankful for another day. I played with pictures, I caught up on some to-do’s I wanted to do, I even juiced a couple of jars of good stuff, and I took out some meat for tonight’s dinner! There is a ton to be thankful for, I’m trying so hard to stay positive, and just hope that this cancer they say I have had for almost 8 months now has gone. I can’t explain it now, but the closer I get to those scans, the closer I feel to it being reality. I got my blood work from Tuesday earlier and my liver numbers have come way down, still high, but one was actually normal! There were a few things off, but they tend to stay off when I’m on chemo and they’re like .1 or .2 off, so we will just say normal. Healthiest sick person you know… always.

Let me just say it again if I haven’t said it enough, and especially since I’ve had a rough few weeks, THANK YOU. I cannot tell you how many people daily reach out, and not always the same people even, just to say “hi, we are thinking about you.” It truly makes a world of difference. You don’t have to have any clue as to what I’m going through and I won’t pretend to understand yours, but I do know through the storms of life, surrounding ourselves with people filled with positivity and love, and having an army of prayer warriors, saints, angels and a God who I don’t always understand watching our back, makes this storm a little less scary. I’ll never be able to let all of you know how much we love our team, but we do.

And to my husband, who I’m sure doesn’t read my blog except on occasion, he’s beyond amazing. I cannot thank him enough for the love, patience, support and care he gives to me and these little girls every single day. He works, serves, cleans, shops, drives, along with 8,000 other things on his daily to do, and even deals with his own emotions. He carries more than I could ever imagine putting on one person. Skip, you’re the best and I love you more than you know, I can’t wait to be better so we can do this next part of our life the best way, the most right newer normal way.

Ah, more tears coming, so I’m done. Battlefront has magically come on, so I guess homework was super easy. Sweet. Love and hugs.

Muah.