The Day Before Halloween - 6 days post chemo

Thankfully today felt a little better than normal. We were supposed to go to a Halloween party and could not go. We were going to stop on the way home from Madisons last cheer game for middle school, and I realized how bad I was feeling. That was my first big outing, in a mommy stroller mind you, and just the lights, the drive, all just too much. I wanted to so very bad but this has been a super hard week.

Madison and I lay in her bed last night snuggling, crying, talking, and she is a positive junkie just like me, and she wouldn’t hear of my faultering. I tried super hard today to engage and be part. Skip brought the table around and I was able to paint my pumpkin, which funny, I liked it so much better than carving. Skip used power tools on his, while M and A went the old fashioned route. Hope this summer weather will give us just 1 day before they rot. Alana made us put up spider web and we made scary eyed balloons out of our starwars balloons. She is really into it this year and had I known we would’ve had a little more decorations. That is unless Skip didn’t find them all.

Anyway, just noting today seemed better. Skip made family breakfast and made sure everyone ate lunch. I did get a nice nap in and even baked a pumpkin for soup. I painted a pumpkin. Alana painted my nails. I watched an entire movie – It was Chicken Run. Don’t judge – it totally sucked me in. Skip rode his bike. Now I’m downloading so pictures for my yearbooks.

Tomorrow is likely ‘switch to a new chemo’ day! It’s currently my only appointment this week! Halloween! So hope to have the energy to play unicorn tomorrow! I hope and pray this is the path. Seems like we need to switch, the scary part is if it doesn’t work for long or at all. Lots of options out there, hope we are led to the right one!

Thank you God for another day, a Wall family kind of day, a happy day, a no tears kind of day. Lord you know we’ve needed that big time. Thank you for special days and peaceful days. I think Zoloft is kicking in, because even on Keppra, I don’t feel like punching someone! Lol. Ok. Gotta run. I’ll try to update Monday Weekly after the appointment. God bless, be safe on Halloweenie, and most of all make some fun memories!

The Decision LIVE

Was not expecting it. Was already having a rough day. Then bam out of what seemed like nowhere, "there are 3 more." 

"Is it LM?" No. I had my fourth clear cytology this week pretty much allowing us to celebrate our victory over LM. 

But instead of celebrating we now have to devise a plan to rid of three new brain tumors in my frontal lobe. 

Dr. Simon gave us his opinion carefully thought out but serious life long term side effects are possible. Seizures, paralysis, neucrosis are in that list but they're in the list as the tumors grow regardless. 

I snuggled in bed with sweet Alana with tears streaming. As always, "it'll be okay mommy" wiping away my elephant tears.

So we are on the way to the neuronologist, who hopefully spoke with Dr. k. I emailed him last night and he said he would email her immediately. 

I'll know what to do. 

Be back around noon.

Just finished meeting with Erin. SO MUCH INFO. Basically all doctors were 100% on board with the stereotactic radiation. She showed us the spots and the swelling that is already presenting itself. We did learn this could be something we deal with more than once. The hope is that the drug I'm on gets nicely into the brain. 

I'm going to get on Xeloda in the coming weeks, giving my body and the radiation time to work and hopefully get my body back to somewhat of a functioning level. 

Dr. Dunbar is working on getting Opdivo transferred here but that will be a later add in as the side effects could cause an autoimmune response making your immune system attack major organs. 

So we have 3 hours until the next visit where I will be fitted for the radiation mask. 

Be back soon...

We killed 3 hours by going to Flying Biscuit, mmmm, traffic, and then searched for a park. Found a weird little park with bike trails. Jealous. 

We went finally to see Dr Simon and talked about a few more things. Making the mask was a go! Same as last time but it's open. He said it takes a good week to set up the project.

Lastly we are wondering if we should continue CBD oil. After I started seizure medication I stopped it, but that is also when it started To go. 

Thank you for the thoughts and prayers. Today went much more smooth than we both expected. God bless. I can't wait to go to sleep!!!

 

So Very Tired

Im not quite sure where yesterday went, or what I did other than laying on the couch, but somehow survived the day. Even on steroids, I was not capable of much. Tuesday I had the occupational therapist come to recommend cool things to help me get around. Did you know they make bath tubs with doors?!?! I realized I wont be needing her, really just physical therapy lady to make me stronger and more balanced. We were supposed to meet today but I knew the chemo dried me up and decided to go in for fluids. I slept through fluids, slept for 5 hours when I got home, not to mention the 9 hours I slept the night before. That coupled with yesterday, it’s all just a terrible blur. This is hard to write.

Hoping to get good results tomorrow from rad onc at 3:00 and then Friday we meet at 10:40 with neuroncologist for the next steps. I put myself back on my higher keppra dose as I kept having weirdness. She will have to find another way to wean me, though this concoction with Zoloft makes for a good team.’

Thank you for all of the birthday wishes, cards, gifts, and cheer you brought Skip and I. We so appreciate the love that has been poured onto this family. About to pass out again, hope tomorrow is better.

How are you Mrs. Wall? “Hanging.” That was the question of the day. Maybe I can sleep the wobbles away. That would be ideal. G’night.

BGinning of a nutty week1

Here we go again. Seems that Alimta and Carbo are having an effect on the chemo so we are going for it! She too agrees the just massive amount of drugs, radiation, and what’ve had done to me, it is a true miracle I am alive. Dr. May started telling us how these side effects from WBRA may just be that, that people with LM just don’t make it as far as I’ve made it. They really don’t know what to even expect next, Im not the typical standard. Yep.  I’m the one percent. It was actually pretty cool to hear you a miracle. Just makes me fight harder, give more, blow of the stupid stuff and never give up my dreams. So the Benadry has kicked in and my nails are long.None of this will make sense and I am about to fall asleep.

Just me and skip relaxing in chemo recliner where every person has a different story. I wish I could help every one, encourage them all. The crazy thing is I can hardly type. Ok…..falling to flepp,,,

A Bit Closer to a Plan

Dr. Dunbar called! Yipee! I think there is a ‘plan-ish.’

I’ll be scheduled to get an MRI next week of the brain and since she and Dr. Simon will read the scans and discuss the LM.

Regarding the systemic diseases she is letting Dr. May take care of those decisions. She needs to determine what the cancer is doing, and make the decision if we stay on AC or if we go to Xeloda and Citabine. We asked about Opdivo and I think she still wants to save it.

She will however have a conversation THIS week and the following with Dr. Kesari about my case. She is working basically as home base, mediating and delivering the best possible options and discussions.

She is having her PA give me companies who will work with our insurance this week for the home inspection. I’m excited about that. What I’ve Googled about seizure protection, have helped me with ideas.

I will see Dr. May Monday, unless I can get back in on Friday. I just want to make everything happen and move forward. Please pray I trust God and his hand upon the doctors, give up control, love unconditionally, fight the anger and cranky feelings, find joy, even on the mean drugs.

There was something I’m going to follow more closely. The last two nights from 6 ish to about 7:30 I feel less badly and the wobbles seem a little less at that time. I am going to follow my diet closely, when vitamins are taken. I want to be free from this, all of this. I just want peace in my heart and peace in my family. We all need peace. Thank you.

I’ll keep everyone updated.

Where'd I go!?

I know that some of you who follow often are thinking, “where did she go, did she fall off the face of the Earth.” Maybe not the Earth but I did fall the other night. It wasn’t bad but it was a fall – just never have fallen backwards. I’ve never done that before. Thankfully, since I haven’t had my home inspection, or any word from the doctors about it, I googled ‘how to make your home safe for nocturnal seizures.’ So when I fell backwards, my angel pushed me right into the spot I made. Otherwise it would’ve went crashing into my nightstand.

Oh wait, have I even mentioned nocturnal seizures? If not apparently you can have them in your sleep and I’m pretty sure I had one. They suck too and I think that’s why Saturday and Sunday were so rough for me. We went to Ellijay and it was peaceful for a minute, but then I crashed for a while and listened to the kids non-stop bickering. I wasn’t feeling good at all and asked to leave. I cried into my blanket all the way into downtown Ellijay, and we hit Apple Festival traffic. I peaked an eye out and the back of the truck had the word HOPE on it. I smiled. Of all the words he had on it, hope was all I could see. Was God telling me to keep hoping? It helped.

The entire week has been hard. Everything is emphasized, blurry vision, ataxia, nausea, food aversions. I can’t even read what I am writing half the time and just look at the keys! Oh and I ordered my walker to help keep me balanced when I walk. Did I tell you I turned 69 yesterday? Not 39? I hate the stupid walker, but I stroll a little quicker with it and should be counting my blessings. So what makes having a walker better? Blinging it out! I’m waiting on my vinyl and it’ll be done fully equipped with gems, stars, streamers, pinwheels, and unicorn vinyl.

Did I mention the doctors are crickets? All I’ve heard is “Dr. Dunbar is in charge of the brain MRI.” Awesome. Dr. Dunbar is now on vacation and haven’t heard how her conversation went with Dr. K. Boo. So I’ll just wait another week to determine if this is working. Oh wait, but my liver is hurting more… so really I think the ball is in Dr. May’s court.  Thing is, I know my body AND IM 99% SURE ITS NOT WORKING. Not sure how we check the systemic since I just had a PET, but I guess I will just trust her to do her thing. We meet Monday and will know more then. Whether it’s more Alimta Carbo or we start xeloda, maybe some Opdivo too!

In more fun news, I have collected bunches of kinds of fun stuff for my birthday and for my Halloween costume. What am I going to be? One guess! Yep, Valdamore! Just kidding, I have hair now, a unicorn!

I almost forgot, yesterday was my birthday and I woke up on the nasty side of the bed. I decided I wouldn’t respond to anything on social media or text until today. I couldn’t. I saw them pop up on my watch, and would smile, but honestly I felt like doo doo. It was a nice low key birthday. I’m just tired. This is actually the hardest I’ve had to fight ever. I cry over nothing. Down more than ever. Trying so hard to be positive, but it is so hard. I know I trust God, but that is even gotten hard. Just pray for me, us, I’m so tired but have to keep going. I have to be here. I beg for mercy and a miracle, my children beg. Skip begs. We all do.

I’ll update again when we figure out what the plan is, when scans are, and whatever else happens. Prayers of peace and comfort to all my fellow strugglers out there. If I could get through the last 41 days, so can you.

They must turn from evil and do good; they must seek peace and pursue it. 1 Peter 3:11