Weekly Monday News or Whatever I've Called It

Just woke up from a very long nap. My mouth hurts so bad but thankfully we are going to get a batch of Magic Wash tomorrow when we go to Northside Forsyth. They called and said, “It’s not covered because I have to fill at CVS.” I was “I DON’T CARE!” It could’ve been a $500 script and we would be getting it.

So tomorrow is the big brain MRI to see how I responded to the radiation. Please pray it’s clear. I need some good news. I go at 9:30 and come back at 3:00 (I think) for the results. I’d be lying if I told you I felt like all was well up there. Freaked out with mad scanxiety is the truth. Wearing halleluiah around my neck to remind me its God’s will, not mine.

Wednesday I meet with my oncologist Dr May to discuss the treatment and get more bloodwork. Also getting Zometa which makes me feel cruddy now again. Yay for my off week being easy peasy!

After that appointment I see my neurologist and hopefully the four doctors can conference in and decide what is best for now. Have a feeling Opdivo is coming and my Cali doctor recommended a newer drug that works well with it for mestastic breast cancer. You know I love his ideas!

Just pray we are on the right path and that the doctors receive wisdom. I know 2016 has been pretty harsh on many of us, but we cannot give up. It’s almost over and I pray 2017 brings much healing, joy, and blessings to our hurting sisters and brothers. Lord hear our prayers.

So Slow and So Tired

Dear Blog,

My hands are getting weaker and it is getting hard to type and write. I feel like my eyes are jiggling even more than were, possible seizures, but who knows. Jittering eyes seem to be followed by a mad dash to the bathroom after taking an Ativan but it feels like it blurs all together.

I still wanted another opinion so Tara took my to see Dr. Covington Friday. Though she agreed with everyone that there has been damage to the cerebellum, she did think we could alleviate the stress on my eyes with cool glasses. Should be easier to look at the computer, phone, and possibly the TV or other LED lights. I hope so.

Wobbles are here to stay but physical therapist will release me next week saying how great my improvement is. Must’ve been those video games!! Haha! I have felt a little stronger getting up and things like that except on days where my eyes are jiggling.

I’ve been in bed, on the floor, on the couch trying to keep warm for the last two days. Yes Im off the chemo pill but if this is how the off week treats me, we are going to have to rethink some of this. I have zero energy. I had to cancel pretty much everything this weekend and hope I don’t end up in the ER with my white cells being so low. Must be why Im so badly exhausted unless I am having functioning seizures, those are going to be what we call the jittering eyes and extreme wobbling for now.

I’m looking forward to getting my MRI this week. It has been 8 weeks since the sterotactic raditation. I don’t think I’ll be able to breathe!! Thankfully they get read that day and I get a bone drug infusion and Dr visit that next day. It’s actually Skip’s 40^th but he said he didn’t care to celebrate it, so we will have fun at dr appointments. After the infusion we head to my nuerologist and that is it. I’m sure we will do something nice, Alpine Bakery…mmm… but since we are eating clean, that may be hard to pass up.

Still praying my mouth ulcers subside, they do not like food very much. Think I counted 15 after my smoothie which did NOT go well, and woke with them in my throat. Yummy! Rash is still there. Stomach continues to be off but yet scheduled so I really should not complain. I mean pooping rainbows is where its at, right!!

Well this was very hard to do, but my baby bear is snuggled with me on the couch, on her fourth book. If she can meet her goal, so can I. And I get snuggles! When ever do you know Alana to slow down?

Last Day of Xeloda Round 1... and the consensus is, do-able

Today is my last day of Xeloda praise the LORD! One dose after dinner, then off for 7 days. I think it would’ve been better 7 on/ 7 off but I know they needed to hit tumors hard. When my marker hits 200 I freak, almost 300 last time and rising liver numbers.

So I emailed my hero nurse. She was on it. Basically in two days I had developed 3 sores in my mouth, a rash up both legs, upset stomach and some killer fatigue today. She worked it so we could get labs done here at Cherokee and then she called.

Platelets look good (then I realized I’d been drinking beets and they always raise my platelet count), not anemic, but WBC were in the trash. Likely why nothing has been healing. I thought I was going to get a neupogen shot to boost them but I think she wants to see what they do 5 days off the medication.

I have a million appointments next week. Looking forward to getting the brain MRI. That we need full resolution and no new tumors. Im also very curious what my labs will be Wednesday while I get some zometa and meet up with my neuro Thursday.

Overall been okay, just these last couple of days. I had to stop the meal plan and not eat out while my numbers are low, but hope to have it back by January. Looking forward to a chill weekend. Have fun!

First Weekend of December

I have been sitting here trying ti figure out what we did this weekend. Realized I never left the house, and if I did I seriously cannot remember doing so. Oh wait! We got Christmas pictures made with Victoria! I ordered a bagillion so hopefully I can get some out soon.

Yesterday again was a very lazy day until Christmas started being pulled from the attics. Thankfully Madison is strong enough to help Skip and that my parents came for dinner. They helped my OCD of things having to be placed just so and the hardest parts like ribbon and staircase garland. I could just call out a job and it magically was done! It was a Christmas miracle. Then everyone watched as Skip placed the angel at the top and the tree was lovely. Tonight we will sort through ornaments and everyone will put theirs up.

Now what was NOT a Christmas miracle was my kids behavior this weekend. I think they are both the most hateful toward one another I have EVER seen in my life. It caused an angry voice I’ve never heard come out of Skip and sent me into a stress seizure. So today I have second day exhaustion and my eyes are going crazy. I’m stressed over kids, Skip’s anxiety, upcoming scans I just do not have a good feeling over, and who else knows what else.

Cancer is hard. I got to share over Thanksgiving at the church, how the last year has panned out until now. What I gave were specifics, I couldn’t look upbecause of the light and barely made it onto the stage without two people assisting me. It wasn’t hard. It was all the truth. It was everything we’ve been through, the miracle ups and the hard falls. What I failed to mention was how much I’ve learned and how thankful I am for the grace I’ve been given to wake up each morning. Whether I wake up with google eyes or wake up and feel steadier, I’m thankful he allowed me yet another day with family and friends.

I just want you to know, the impossible can be made possible with your heavenly father. With wild seeking for his face and a village, or even world of prayer warriors, I can yet see another miracle. I keep seeing things taken from me as a negative when in turn I can find a positive if I look hard enough in every one. This last one was “great now I cant even soak in the bath without a babysitter,” when really I can sit and have quiet time with Skip or one of the girls. And before you yell at me for not being allowed to have hot baths because of xeloda, I found a way around soaking my hands and feet. Lol I look like a cat thrown in the bath with my hads and feet hanging out but it worked.

As most know I have this little obsession with unicorns, actually I’m sure I started this trend, but I came across a cool scripture reminding me that God is greater and more powerful than my unicorns. They are a positive distraction but never a replacement. So I end with this:

A horse is a vain hope for deliverance;
despite all its great strength it cannot save.

Psalm 33:17

Xeloda

One week Xeloda down one week until my 7 day break! I don't feel

Much different than I have so that's a good thing. 

I have a wild anxiety that nothing is helping the brain tumors. And if it didn't help i think I may know why. Technically. It COULD be Metastsis of thyroid cancer up there. 

Not thinking I'd let them biposy my

Brain but I am somewhat curious. Regardless I had another seizure tonight. In the bath! Skip saved my life. All I say is Ativan NOW. Window. Sill. He said he's never seen my body convulse like it did.

It was a nasty one. Thank God skip came up to vent about girls and sit with me. I could have never gotten out. 

Please pray for anxiety and stress relief for all four of us. We are overwhelmed. Not much longer and one of us is going to crack. The girls cannot be in the same room together without all hell breaking loose. 

Just pray. And for 12/14's scan to be clear. We need a break...

Xoxo

Good Days are Such Blessings

Today started with a surprise visit from my mom and Isla! I was so excited!! We went and ran errands at the bank and CVS and then ate Chick fil A for lunch.  She got some energy back and played so happily on the playground with the other kids. We did more shopping at Target and I didn’t even use a motorized scooter! Just the walker and got a few more buckets to organize Alana’s new room. I’m confident that she has more Barbies than people I had at my birthday party. They are overflowing from a HUGE Tupperware bin. Plus a bin of nothing but clothes and tiny stuff, another of furniture, not to mention 3 cars, two little homes, a cruise ship and a Barbie dreamhouse. I guess 8 years of obsession with Barbies, that is how its done. I’m just hoping with bins labeled and ALL the sorting me and my mom did, this child can keep her room clean. Hope.

Isla decided she was ready to go to nanny’s house when I scolded her and popped her booty for punching me. Oh no, that does not fly with me. It was instantly, “I wanna go to nanny’s house.” Which you almost have to giggle, because really in like 5 minutes I looked straight into her eyes, said, “I love you” and she said it back with no hesitation. It has been a while since she has done that and it MADE my day.

And then my Lana Bear and Madison came home and there was peace. No whining, no arguing, just giggles from Alana watching her computer in a little fort she made, Madison and I crafting her homework and then friends over for dinner. Honestly it was a good day. It was so good that I did physical therapy exersizes ON MY OWN! That is huge. Madison and Skip discovered that my balance did improve after playing a week’s worth of wii balance games. I hope to get the power point. She did SUCH a good job!

Well that is it. I got a ton of refills, unpatiently awaiting the brain MRI and am getting the run around on getting my 4 week cytology drawn. May mean a trip to the West Coast! Have to amazing people I need to see if so. Jim my only LM brother (2 year survivor currently NED!) and my Brittany (Struggling with the fight of her life). Plus, I love seeing Minh and Dr. Kesari so who knows, maybe it’s time. Technically I need to see Dean Collins too, just not sure how to get around so much of the state unless we make it a family vacation! Haha. Never know I guess. The kids just want a selfie in front of the Hollywood sign and they’ll be good.

Well that is it for now. I can’t harass my poor husband any more about taking down Christmas from the attic, work is beyond stressing him out. A good episode of Colbert or Noah doesn’t even distract him enough. So if there are any strong guys up for the challenge I think he would appreciate the help – as long as no one falls through the ceiling. Hehe.

Off to bed. Just had at least 30 hugs from Alana and a quite deep conversation about cancer. Shestarted it with, “Well mom, you know, if we knew what caused the cancer, couldn’t we then reverse it?” she’s my brilliant one. We talked about DNA strands and mutations, and a whole bunch of stuff I cannot remember, and then it came. “So does that mean I’m going to get cancer too?If it can be passed down by your parents?” I never EVER wanted to hear that question but I answered honestly. “yes.” When you are 18 you can choose if you want your DNA to be tested so you will know and have early screening and tests to catch it early. But we hope you don’t. “ and she said, “and Madison either.” I don’t know where she gets her geniusness from, oh wait, that’s from Skip, but it blows me away each time she goes on a rant like tonight. Whatever she does in life will be life changing, that I know for sure.