One of the Worst Days in the History of my Life

“Extensive Intracranial Leptomeningeal Metstsis.” Four words that crushed every hope I had of beating LM.

I had not heard from the doctor and my anxiety, though in prayer, was hitting my max. I called Northside, had them prepare the CD and clinic impressions and made my way with Skip to the office. God is good, God is good, God is good. Were about the only things going through my head as we approach. I had prayed for God to prepare me for whatever news I received today.

The receptionist at this point knows me by name and began to hand me the sheet. I said something like that sheet you hold is life or death. She grabbed it back and prayed over it.

I went to the car. Skip dropped his conference call and we held it there. Why is it 3 pages? No. Oh wait, haha, I had 3 MRIs. That was funny! I began reading and the brain came first. I can’t even remember all the words at this point, but I knew they were bad. It’s like when you take Spanish in high school and you know most of the words, so you have a pretty good understanding of what its trying to say. Yes, that was me. Scanning every word on the 3 pages, heart sinking, realizing, this was likely going to be close to the end of my journey.

Findings. That’s when I saw the four words. Okay God. Not sure what you are doing, but I’m okay at the moment. Skip insisted on driving, but somehow I was okay. I was prepared – he was not. I was good all the way until the speed bump before my house and I felt it welling up like a big pile of sucktasticness and all I could say was, “I just want to go see the Grand Canyon damn it.” Alana wasn’t at the bus stop yet but everyone else was. I wanted to walk down, but quickly realized our emotional states would be better dealt with at home.

Skip and I sat on the couch, holding crying, unable to comprehend fully what we just found out. Alana knocks, she sees me crying and asks probably three times, “whats wrong mom?” Usually, its “mom, are you crying again?!” In a silly tone. This was, don’t give me bad news. I didn’t realize there was a difference.

She sat with us for a while, I let her know simply my scans were not good for the moment. Skip worked to pull up the MRI images. By now, Madison is home, I tell her the same while Alana is off playing, and then we round us all up. Madison is questioning what she sees on the screen and I gasp at the first image. Everywhere. The little bastards are all over my brain. I couldn’t see the spine like in the previous scans, but from what we know, the disease was NOT prominent there. No suggestion of leptomeningeal progression or metastasis at all! The bone lesions apparently had diminished as well. So now, the miracle of pretty much ALL the cancer is gone, which note, is HUGE and I cannot believe how amazing that even is, but now I’m dealing with 12 plus tumors in my brain.

Basically, the first phase of the Topotecan worked. We had clear cytology and my brain MRI showed the two tumors gone. The second phase which ended January 4^th (but then moved to January 8) showed that it did not work, that my ommaya is surrounded by inflammation (possible toxic levels due to chemo, infections, or just plain pissed off tissues) and new tumors in the meninges in a short 6 weeks. Devastating.

We are talking about MD Anderson, our trip out west this summer that we have been planning together and I knew at some point they needed to know the reality, but wasn’t expecting it to be told here and now. Alana kept saying how she wanted to wait until after the last day of school to go with her sad, non understanding way, and that would be my preference to peanut, but instead it comes out in the sweetest quietest voice I know how, “Honey, mommy probably won't be here for the last day of school."

All four of us broke into streams of uncontrollable tears. Positive. We HAVE to stay positive. If our miracle is out there, God will show us. Maybe MD Anderson has something new or the way to make this happen. I had to be stronger right now and since God had prepared me, convinced of this and unable to fully describe the peace I had, I went to town in good old Nadine-mommy fashion. We had to pull it together because a day full of tears and meltdowns is a wasted day. I want smiles and sunshines and rainbows!!! I have bad days, but today cannot be made any worse. It hands down sits alongside the day I was diagnosed with Stage 4 and then again with LM. They all suck, except now that my kids know the full ramifications and see our hope struggling, this may actually move ahead to numero uno. Stupid cancer.

At some point Madison took the dog out and I saw her shoe-less on top of the hill. She tends to need alone time when she is processing anything hard. She came in and said we needed to go out and see the sun spot on the ground. That its like the spot in Ellijay, up on the mountain where you can just sit and the sun makes this perfect little warm spot and beautiful view. So we did and I hugged her in the now moved spot. I have to admit, I needed to feel that warmth on my skin. It was beautiful and peaceful.

In we came and I quickly decided that the $200 I just spent at Trader Joes for meals this week would just have to wait, because I was not cooking. We all instantly agreed Brooklyn Joes and eventually I wasn’t distracted enough and ordered. We decided movie night was in order and for the first time maybe ever I let everyone eat in the living room. We cleared off the coffee table, they were even allowed soda (who am I?) and we started the Jurassic Park series. For all the Apple Gift cards we have received over the last months, thank you. Movie nights have been awesome nights. We ate, snuggled, jumped and laughed. For a moment, everything was right with the world.

We went upstairs, baths, prayers (crazy bold prayers) and bed. Shocked, Madison was begging to go to bed with her eyes half open and Alana went to down pretty quickly. We put Jax in bed with the sleepy peanut and Skip and I had our own time.

I couldn’t stop smiling at him. There were so many things said, that through the smiles and tears we finally got out. We were supposed to grow old together and die within 2 months of each other because we couldn’t live without each other. And I started in with my things I need you to make sure of. I stopped but he said he needed to know, and so it began. All the wishes and dreams I have for my two girls. They have to marry GOOD boys and that they always love God no matter what. That I can envision them being pissed and yelling, shoot I can see myself like that, but that I need him to make sure they keep their faith. That they always have someone to talk to other than him. Have them call their nanny every day, call Ms. Amber, go visit miss victoria, whatever, make sure those kids have someone to talk to. And it went on and on and on. Inbetween painful hard swallows and tears and snotty noses, I think I got out pretty much everything I needed him to do. Kind of. The rest of it is in unposted/hidden blog posts and I’m sure I’ll add to those as the days go by.

Finally I needed him to know that one day he will want to move on and meet some girl but he cant bring her home for at least a year and the kids MUST like her too. Because if they don’t she is a no go. HA! He is looking at me like a crazy person Im sure, but I’m serious. Girls are psycho and I don’t want some psycho raising my kids. My other request, and we’ve talked about it before, that whoever it is, it has to be someone we don’t currently know. OKAY! Breathing a little more.

We are off to bed. I fell asleep quickly, but insomnia struck at 3 for me and 4 for Alana. She just moved to the couch but she sat in the recliner with me cudded up, heater on, as I wrote this. So I’m leaving things at that. I must go back to bed with her. The couch is looking pretty inviting.

Oh, lastly, we will know more today. I have an appointment Wednesday at MD Anderson that we will drive to either after school today or Saturday, depending if we want to see the grand canyon first or if they can move up the appointment. We ALMOST moved it to this morning at 10AM but that was going to be a rush to get out the door and about 15 hours of traveling. So since I know better now at acting on quick plans, we stayed home and I declined the ASAP invitation. I’m hoping there WILL be a cancellation tomorrow or Monday and if so we will have bags packed and ready when that time comes.

Dr. May also called and we laughed and she found it crazy we are always on the same page. She said she recommended I go out to MD Anderson. That this past week they were JUST talking about having good results with high dose Methotrexate intraveniously but likely we would look into radiation and things like that too. I was glad she said MDA, because guess what, I got my appointment DAYS ago! Just because I felt the need for that second opinion again. Funny how all those things always work out.

I’m sure there are more of those perfectly perfect moments, but for now, that is all I can remember. My symptoms are achy back/neck (probably still from hell MRI), blood in my nose whenever I blow, and headaches (the ones you know aren’t right – been since my last IT chemo). So for all practical purposes, I’m still asymptomatic which is bizarre but then again, if they’re gone or mostly gone on the spinal cord, I guess there isn’t any neurological interaction or cut off. Guess I’ll be re-researching everything. Super tired, going to cuddle with peanut and hopefully wake up for what will likely be their last day of school for at least next week, but maybe a few.

Not sure what else to say or pray. Just peaceful knowing so many are interceding for us and that the Holy Spirit prays for us when we don’t know how. I feel pretty strong, and I’ll fight, but there will be a day I say no more. Please, be ready for that, I am. Love to all.

Me.