Tag Archives: struggle

The Struggle is SO Real

This past week was horrid. Lots of mix-ups, including miscommunications at the hospital and among the doctors of our clinic. I ended up on the phone with our Allo Nurse for about an hour and a half yesterday after I sent an email to our doctor (who read it on vacation and asked her to please call me) about how things had been unacceptable as of late.

Cancer aware

It has also proven to be the most taxing ride our bodies, minds and souls have ever taken. Literally, Mark got super sick on Monday April 14th… today is the 16th of September!!! If anyone asked me if I thought we could last this long when it all started, I would have guessed- no. This has been five solid months of uncertainty, pain, heartache, grieving, surrendering to a life completely different from your intentions and plans and trying the entire time to have some sort of acceptance and some sort of strong fight as well as the ability to continually go with the flow and not allow yourself to succumb to the negativity and the suckyness of the situation. At times, I have run hard or done some kickboxing to fight through my emotions. Many times, I close my eyes and remember how it felt to allow myself to float in the waters of Belize as we snorkeled. Most of the time, though, my body seems to be struggling just to get through a day, let alone add to it any type of real workout.

Ribbon Color Chart Pop-Up 3

Until you come up against this kind of battle yourself, a life and death situation that lingers, I feel like it’s impossible to imagine all that goes along with it.

It gets more and more difficult for me to take care of the everyday little things in life- laundry, changing light bulbs, cooking, cleaning… these are all demands that by the time I come home to spend time with my girls seem so meaningless…. unimportant…. I ask myself, is this really what I want to spend the little energy I have left on?  I have to remind myself that my girls need a home that is warm and inviting and letting them know that they are cared for. I do what I feel I need to do and then I feel like collapsing.

Sunday, I spent about 2 1/2 hours bawling in bed. I literally said, “I feel like I want to quit eating and die a slow death.”  If I had not had some friends reach out to me, I may have called the doctor yesterday and asked for some medication. (Y’all know I don’t take medication!) Yesterday I went to Denver and Mark fell apart in my arms twice. Ladies and gents, this has gotten to this point. We need held up. The psychologist has told us we need to be in this boat together riding the hard waves of this great storm. If our family separates and we each stay in our own boat, we are just going to drift apart and ride the waves alone. So, we are riding together. We are having difficult talks, we are being honest with each other about our emotions and what is happening as we go through this as individuals and as a family.

It’s weird, because we don’t at all expect people to get it unless they have lived it and to try to find words to explain it all just doesn’t work. There really are no words that can express the difficulty of this.  I wouldn’t wish anything like this on my worst enemy, I can tell you that. And I try to remind myself, that when this is over, we will be able to use what we have been through to help others. I look back and remember how God has provided all along and I remind myself to trust Him still and that He is always good and will take care of us.

This battle has been long and hard, and it’s not over my friends. I was raised not to make more work for other people and so it is hard to feel like that keeps happening. My family keeps needing…We got the good word that cancer was gone last Friday, only to face the worst week we have had so far. At least with the diagnosis in the beginning, although unexpected, we had a definite plan of attack and we knew what to expect in many ways…

At this point, no one really knows what to expect. The doctor’s analogy is that it’s like being in a war and going through a mine field. You never know what you will step on at this point….

Mark is having what looked like Graft V. Host Disease from his endoscopies. His intestines are VERY fragile. He is in a TON of pain! Stem Cell transplants are different from other transplants in that they are not rejected by the body, rather, the stem cells reject the body and fight it as they adjust to their new home. It’s not all bad that this happens as it also means that they will attack cancer cells, but it is more than hard to be Mark Neu right now and have this new battle happening within your body, having not had much time with friends to speak of in months and missing your kids and your wife when they are away…and it is very hard to be me right now feeling torn as I live again (Still)  trying to take the best care I can of Mark in Denver and our daughters in Firestone. I can’t speak for my girls, but I just cry when I imagine their lives. So, if you are involved in our lives, I just want to prepare you, just about anything is possible right now if you are around us- but I think what all of us needs the very most is prayer, lots of hugs and unconditional love.

I hope you can continue to hang in there with us and be there with us. As I read in my studies, it is just as I suspected, PEOPLE NEED PEOPLE. It’s so much worse to go through something like this alone. You would much rather have someone look you in the eye with fear or tears and tell you the honest truth that this shit scares them, they feel helpless or don’t know what to do or that they don’t like to see you like this and wish you were healthy but be present, than to just disappear and have to go through all of this feeling isolated and alone.

Cancer punch

CANCER, I HATE YOU!!!!!!!!!! I ABSOLUTELY HATE YOU!!!!!!!!!!!!

 

The Truth Is, This Is Hard

Ok, so the whirlwind is over.

We know what he has, we know why he was so sick super fast.

We know what needs to happen and now we wait.

This is hard … for him, for me, for our girls, for anyone who knows and loves or cares about any of us.

We all want to do something. We all want to help. We all wish this was a bad dream.

This is where I am torn. I want to keep everyone up-to-date. I want everyone to pray. I want someone to be a perfect match for him so he can get better! But, I miss so much our normal  life. I want it back.

This life isn’t normal for us at all. We are a family unit. We hang out all together a LOT. We are big on being at each other’s events, games, moments, etc. We always have each other’s backs. We are a family who all sit around our table and eat dinner together at night- whether that means 4pm or 8pm according to events happening that day.

We understand each other. Shyanna, Nikayta and I are introverted to the point that sometimes we just have to say, “ENOUGH. I don’t want to be around any people.” Tanise, Mark and Cadence seem to get energized from people. But, we all enjoy our space and the ability to live life the way we feel like living. I miss sitting in the sun absorbing as many rays as possible all alone in the quiet stillness. I’m sure the girls miss mom and dad being home.We miss our cuddles and movie times and the ability to look forward to the plans we had and have and feel happy and free.

The plans…. the celebration cruise we just cancelled. Thank God they are giving us our money back as Shyanna will need a car for her 4-5 hour road trip to college this fall. Graduation planning. Yeah, that’s still happening, but it isn’t looking quite the way we had planned. I want to be there and be excited for her… but it’s hard for her to be excited right now. I get it. But, I hate it. She was too tense to audition for the Commencement speech and you know what? It was a GREAT speech that she wrote! This makes me sad. As a parent, you don’t want your kids to be stressed.

And it isn’t just her…. it’s my other daughters, too. Going to school and trying to finish strong and keep their heads up while they worry and miss Mark and I …. And it’s Mark. Look at him laying in bed. I see him staying positive and making us all laugh and I think, “How is he able to keep this up?” Then I see the tears break way as he, too, is wishing he could be there. When he tells me he wants this event to be as normal as it can be. He doesn’t want them to bring up him having Leukemia and it is because, he, like me, wishes that our girls would be able to have what they are used to right now. He wishes they could have that normal, happy, celebrating life.

So many questions and concerns from everywhere and we are learning to live more in the moment. Our thoughts cannot really go beyond who is the match and let’s be in remission right now. It’s just too much and so far out of our control.  The doctors keep saying, “Focus on what you can control.” And we are trying. Exercise, Food,  Hygeine. I believe we also can control our attitudes but I would be lying if I said that sometimes, that is hard! It is a little harder I think when you are locked up all day and night within the walls of a hospital room and an oval hallway.

We continue to be thankful for love and support. Some of it is constant and unchanging which means so much- some of it is not as consistent and that is ok because we know everyone has their own life. Some people have been completely no where on the radar and you know they care- but it must be hard for all of you, too. Everyone handles everything in their own way. It is hard on everyone.

So, for now, I feel my job is to continue to be as “real” as possible. I have been crying almost all morning off and on. Now, I write. I will go run steps and do some pushups and that will help, I will get dressed and put on some make up and do my hair. That will help. But, the reality is that we are very helpless right now. We are relying on God and others.  And, we are trying to control what we can and to make this time as normal as we can for our family…. but the truth is, we don’t even know what that is right now.

Living in the moment.

Remission/ Donor. We need both. Space and love. We need both. Hugs and prayers. We need both. Understanding and Wisdom. We need both.

This is me being real. This is how I feel today. I’m sorry if  it upsets anyone. But, I was told to be real…. and that’s what I am trying to be.

PS- Mark wanted to make sure people knew that he is not allowed to have flowers (unless they are balloon flowers) because of the spores, etc. THANK YOU!