A Little Rant Goes a LONG Way

I haven’t blogged since the most sucktastic day ever, but the days got a little easier as they went on. That was Tuesday, today is Sunday. I have this overwhelming anxiety that we are waiting to long. That during this off time, my aggressive cancer is growing and that scares me. I’ve prayed and talked to the stupid little things and have asked so hard that the cells stop growing right now. See, when you are diagnosed with LM, if you choose to “do nothing” your prognosis is 4-6 weeks. So basically, we are on that path as we “do nothing.” I don’t want two weeks to go by and we are still interviewing doctors, I have this feeling of urgency as I guess for anyone would seem pretty normal. And that is why I cannot sleep tonight. Not because I don’t know if MD Anderson is right for me anymore, or if going to Cedar- Sanai is the best ideas, it’s because in the meantime, every day becomes closer to the 4-6 week mark and I would rather do SOMEthing that NOthing.

So, something happened yesterday. I woke up and had my quite time. It was nice and I felt good. I opened my facebook app and there she was again. Why will she never write me back? Call me? Email me? Whatever. The she is Valerie Harper. I was struggling with the fact that she is about to be a three year survivor of LM yet, there wasn’t anything I could find at the time that said HOW. I feel like as survivors of ANY cancer, we form another family. They are the ONLY people who can understand truly what you are experiencing. She is a HUGE advocate of lung cancer but I feel like the people who have LM don’t have a voice. They don’t have awareness. There is nothing out there except grim and dismal outlooks. I was at a very low point when I ran across her first video. She was the FIRST survivor I had found that had LM and was BEATING it. I was amazed and have been following her via facebook and news articles since. It gave me an energy and hope that was becoming lost in the diagnosis. So how many people could two people help? I feel like a lot. Whether they are diagnosed later or currently living the nightmare, I feel like though it’s a somewhat sad community of very few people, we could change that. Encourage people to live for each day, how to stay positive, other things you can do to fight this, the BEST LM doctors in the country, maybe the world. Maybe I have high expectations, but I know on my own, my story recently did a 180 and we are back to square one. My treatment STOPPED working and everything grew back in my head in 6 weeks.

So crazy little me made a little rant on Valerie Harpers facebook page. Knowing good and well at this point she NEVER responds to anyone personally, and that she likely has an assistant that takes care of that for her, I still wrote as if it were to her. Because, it is. Then I may have brought my rant to team Nadine asking to keep the post at the top. Well, #teamnadine are a bunch of crazy awesome, praying, believing, positively hopeful people that went to bat for me. Not only did they make over 20 comments and like the mess out of it, they started writing their own pleas. Some of them even went to the point of researching for hours, sending us her doctors name, videos and anything they could find. Then, in the kitchen, Skip shows me the message of all messages, someone he knows has worked with her doctors. We have already made the phone call to that office obviously leaving a message since it is the weekend, we have faxed medical records that WE have (this is why you keep a medical journal and copies of EVERY SCAN AND REPORT because you NEVER KNOW!) Even Madison jumped in on the fun. She wanted to know more about Valerie, stumbled across her facebook page, and she posts something too. Come on! It’s from a TWELVE YEAR OLD who is hoping and praying her mom lives. Because right now the kids know their mom likely won’t make it to the last day of school, cancelling our tour of the west. See we weren’t supposed to visit the Grand Canyon now, we have been family planning an entire month this summer, of National Parks and amazing places I’ve never seen. We were going to but a camper trailer (we’ve been planning this since last year) and were going to spend most of the summer out there. When I was rediagnosed, it was a goal. Now we wait, we wonder, we pray and  and are desperately hoping to hear something Tuesday, since Monday is Martin Luther Kings birthday, or better yet, “drop dead day.”

Oh, Drop Dead Day is the date I personally made myself back during diagnosis. My doctor called and said, “I really don’t even want to tell you the prognosis of this.” I said I knew, I looked it up, we were looking at 3-4 months. She said yes and I have estimated that to be January 18^th. Which is Monday. Skip found out my little secret on a walk yesterday. I think had we been anywhere else he would’ve tackled me, and scolded me for such a horrible name and observation. But Madison saved me as did the West Grove hill back to our house. Out of breath baby! But it is what it is. 3 ½ months since diagnosis this Monday. More anxiety to add to the entire mix, which is likely why I cannot sleep tonight.

In the meantime of ALL of this doctor stuff, oh and American Express stuff (don’t even let me get into that scare) this morning, I decided looking up and reviewing doctor names would be good. This Dr. Rudnick, 5 stars! Yes, that is MY KIND OF DOCTOR. You know, both of my doctor daddies have five stars too. Yep, I’m bragging because I love them to the moon and back. So anyway, I thought, let me see about this doctor I was paired with at MDA. Thursday, 12:45. Whomp, Whomp, Whommm. Unimpressive. One star. Doesn’t even do research on LM. So, guess what ELSE Ill be doing Tuesday. You got it, letting them know I won’t be seeing her but I will be seeing one of two other doctors that day instead. Oh, they’re not going to love me after this. Seriously, why in the world would they ever think we would be a good fit?!! And what is happening to me?!! I’m the one who interviews, googles and does my homework before seeing a doctor. Head down in shame.

So back to the team. So they didn’t just stop with going to town on social media, no, they kept going. Dr. Oz, Dr. Phil, news affiliations, I don’t even know all where our story is being heard, but it’s out there. I honeslty have to say, it makes me laugh. I’ve gotten a kick out of how passionate and how much time these lovely family and friends have just took it upon themselves to make LM, my story, our fight for life known. Because it’s not just me fighting anymore, it’s all of us.

I guess I should end this and go to bed. I’ve promised to be at church at 9 AM, thinking I would sleep soundly after my energy spurt day. Guess not!! Funny thing, I still have mega energy…

Specifics for Prayers, Positive Vibes, thoguhts, whatever you do:

·      Tuesday is obviously HUGE. We will attempt to contact Dr. Ludnick’s office for an immediate appointment. I’m talking I will hop on a flight from wherever we are. That is now my number one goal.

·      Tuesday is also the day I will call MDA back and ask to be changed to have an appointment with Dr. Groot (Yes Wagner family, I know, that would be the BEST) and Dr. Yung. Either way, pray they are in town, and that I can somehow see them ASAP.

·      That we know when to leave. It technically takes 12 hours to Houston from Atlanta and we have an apt at 12:45 Thursday. So we COULD leave Wednesday at the latest. The plan was to leave Monday and hit a couple of parks, hike and see some cool places on the way. There is a piece of me wondering if we need to wait until Tuesday now. I am not loving waiting God, please confirm earlier!

·      Prayers for NO increase in side effects, no seizures, anyurisms, meningitis, nothing while we sit back and wait. That the medications I’m on Letrozole and Ibrance continue to keep the systemic disease from growing. That I continue to have little side effects.

·      For peace for my entire family. I’m a really positive person and I’ve felt a lot of peace. I know for me in the long term, will most definitely be easier for me that for them. We are ALL not looking forward to “that day” but know it’s inevitable. And honestly, is for all of us which is why we put “50 years of living into a few short months.” Nerves are shot and keeping busy is a good way of ignoring it, I see it in all of us.

·      Pray for safe traveling and to make amazing memories made with our kids while they are out of school. We withdrew them with intent of placing them back in 2-3 weeks. Enough time to go out west for a minute and hunt for our miracle. It’s really hard for them to get along, so pray we are surrounded by angels and that their love for each other grows as we spend time together.

·      Pray for our family who won’t be with us, because I know that will be hard too.

·      Pray we just have the wisdom to make the right decisions on the fly and that we know when those quick decisions have to be made, that they are covered with the Spirits leading. I am a terribly slow decision maker. (I promise you don’t want to take me to dinner. I just cannot help it!)

I think those are most of the pertinent. I do have to say, I’m beyond humbled and the emails and conversations I have had with people lately saying how our story has brought them back to God, brought their families closer or has strengthened their walk with God. It makes me sad that it takes something like this to make us all see the beauty and preciousness of life, but it also makes me smile to know our journey will not be wasted. We are loving each other more around the world because I have #stupidcancer, and that as weird as it may seem, I am thankful for.

Thessalonians 5:16-18 Rejoice always, pray continually, give thanks in ALL circumstances; for this is God’s will for you in Christ Jesus.”

Hard, but true. Giving thanks. Rejoicing in the life I was given. And going to pray now. Bless you for being on my team, for praying unceasingly and giving my family hope when hope seems to fade.