Tag Archives: life

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.

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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.

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

 

The Long Haul….

This past Sunday was the beginning of a very difficult week. Mark took the higher dose of 2 Ambien instead of the one he had been taking and as a result when his UTI woke him up, he fell, not once but twice and was very disoriented and since he didn’t let me know about the fact that he took that extra Ambien, I thought something was majorly wrong and called the doctor, who had us go to ER.

In the process, I discovered some things I would not have known otherwise …. he had blood in his urine (apparently since Friday) and his lower extremities were very swollen. (could never see that as he had been wearing, socks and long pants a lot.) I indeed thought this was alarming (though the ER docs. didn’t) and called our Allo Nurse when we got home to let her know. She had him readmitted. Being readmitted to the hospital is very normal and a big reason they have transplant patients stay so close to the hospital.

Mark wasn’t happy and to make matters worse, the communication at the hospital and between the hospital and the clinic was terrible!!

In short, his UTI- though viral- is clearing up. He is very tired, but at least he is at the apartment and at his next Clinic appointment, we have plans to complain about several mishaps that occurred due to communication break downs this week.

We are waiting results of biopsies on his upper and lower GI tract. Hoping to find out exactly what is causing his stomach to swell and hopefully have a plan to get him back to normal. 🙂

It has been a true blessing the people who have come to stay with Mark and take part in his caregiving a week at a time! First, Carmela and her husband Brett- some of our best friends who just happen to live in Oklahoma! This was perfect as they came when I had to take Shyanna to college and this could have proven to be an incredibly difficult week for Mark, but having the two of them with their incredibly positive attitudes, encouragement and love pouring out, made it a bit easier on him. (Of course everything in him was wishing he could bring her to college- so it was an emotional time.) The perfect people for that time!

The next person to come was Andrea, Mark’s step mom. She is a nurse and her expertise was perfect as he had developed his urinary tract infection, had become somewhat dehydrated and had to be given extra fluids at clinic and his medications were changing up quite a bit. It made both of us rest easier to know that she knew a bit more about the medicines and had her nursing knowledge to care for him! Again, the perfect person for that time!

Currently, his mom is with him and that, too, is perfect!! Who doesn’t want their mom when they are having a rough time… and this has definitely been a difficult week! He hasn’t been feeling great, hasn’t been resting well with the UTI  and it’s been frustrating. There is no other love quite like a mother’s love….

In the mean time, I have been able to, after four and a half long months, get home, spend some real time with our girls (who are still kids, by the way, and need their parents) and take care of things around our home. Although, to be honest, I usually have a day or two each week I get to be home that all I want to do is lay around because I am utterly exhausted. I’ve followed Mark around the country and raised four kids who were all born within five years, and had various things happen in my life, but THIS has been the most that has ever been asked of my emotions, mind and body in my entire life day in and day out. I am so thankful for all the support I have. I believe I may just crash when this is over.

Our family and close friends, especially, have been a rock for us! It’s also been great to have the opportunity to strengthen relationships with some family that we haven’t had the opportunity with as much (for instance, Mark’s dad is so much like Mark, that it is amazing and it really brought me and the girls a calming feeling when he was around) and some people I didn’t know as well before all of this and have had the chance to get to know- and I thank God for them daily, now. The way God has kept us all safe and secure and provided for not just needs- but also some wants- has been incredible!

I would be lying, however, if I said that I CANNOT WAIT for the month of September to pass and my HOPE is that in October Mark can come home and we can all just live in one place again….”I can do 30-40 more days of this…. ” “I can do all things through Christ who gives me strength.” These are my mantras and I now compare myself to the little train that could…. Or Dori, the fish who said, “Just keep swimming.” I have to just keep believing!!!

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The Journey Continues…

Yesterday was day 52. Yesterday we got the results from the  FISH test they did on Mark’s bone marrow…. In case you haven’t heard….

That test showed that the translocation of chromosome #11 is not happening. The test showed no MLL and no signs of Leukemia AT ALL!!! (#11 was the one they were most worried about out of the three that were mutating.)

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Mark was pretty much as emotionless as he has seemed all along. He is a rock. I, on the other hand, cried on and off the rest of the day; typical. 🙂

This is EXACTLY what is hoped for when you hit a person with the big guns of chemo, wipe out their immune system and then introduce, new, healthy stem cells! Though we don’t yet have a percentage of how #21’s donor cells are taking over compared to what might be left of Mark’s, we know it must be heading in the right direction because….

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#21, in case you missed it before, is how we refer to our anonymous 21 year old male stem cell donor. We all TRULY hope we can meet him one day and let him know how much we appreciate him!

We are so thankful to God, for the way He has taken care of us this ENTIRE time! We are so thankful for the MANY people who have been like His hands and feet to us through this, taking care of our needs and even wants along the way. It has blessed us IMMENSELY! So much so, that words cannot even describe!

From here, we still need prayer. This journey is still just that, a journey. Mark and I are still living the city life and we still have people scheduled to come out and stay with him so that I can be home with our girls half of every week that he has to stay in Denver.  This was basically our first checkpoint post transplant. WE ARE ETERNALLY GRATEFUL for the results of this one, but, another bone marrow biopsy (Poor Mark- he’s had 4 or is it 5 already now.)will happen again around day 60, then around day 90, another around 6 months and then around 1 year.

Also, currently, with his immune system being suppressed, he has a virus which had been dormant, creep up called CMV. He has been taking anti-viral medication for it and keeping it in check- but it is there.

He also has a UTI- a viral UTI so we have to wait it out and just try to help the symptoms he is having- but we are praying that it passes quickly and without complication.

Lastly, he has had some tenderness and swelling in his abdominal region. They had tried to treat for GVHD and as said above, he is on medication for CMV (two things they think could be causing it) but it is not clearing up and the distention in his mid-section continues to grow to uncomfortable proportions, so, Tuesday this week he will have endoscopies done with biopsies taken to determine what the exact cause of this condition is so they can be sure to treat it correctly.

CMV info- http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

GVHD info- http://my.clevelandclinic.org/services/bone_marrow_transplantation/hic_graft_vs_host_disease_an_overview_in_bone_marrow_transplant.aspx

What a day! What a weekend! We are planning on continuing our celebration. Yesterday it was just the two of us, but today, we will see some friends and be with three of our girls AND we are having a sleep-over with them at the apartment tonight! (I LOVE, LOVE, LOVE it when we can all be in the same place together!)

We miss and love our Shyanna, but we are extremely happy (and not surprised to report) that she is doing FANTASTIC as a college student and basketball player! 🙂 AND, she is bringing home a few teammates next weekend for a visit ! 🙂

HAPPY TIMES and we are thankful we can share this part of the journey with you!

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Faith….

All you need is faith the size of a mustard seed.

Faith is believing in what you cannot see.

Your faith has healed you.

My faith is realizing that I have tried living without faith and I realize that I always have faith in something. Whether it be a person, a thing, a theory…. It takes faith to sit on a chair and believe it will hold you up. It takes faith to believe in evolution as there are some things there they have no real evidence to back. It takes faith to trust that someone will love you and do what’s best for you when you give them your heart — or open up and share with them who you really are.

It takes faith for me to have the set of beliefs I have. I believe in God, our heavenly father. I believe in His son, Jesus coming and giving his life for us and in his resurrection. (There are plenty of historically documented stories about his followers who died and went through some of the most awful deaths because they believed in Him- and I would ask myself, if he didn’t make that second appearance, would they have? I don’t think so. Because then, he would not have been who he said he was and they would have only watched him die and been completely let down.) I believe in the Holy Spirit and I believe it lives in each of us to guide and direct us if we allow it.

So, I have tried life without faith in God. I have come to points in my life of feeling abandoned and rejected and unloved and I have thought there must not be a God that loves, either. I have seen the unfairness of illness and death too many times and thought WHY? If there is a God, WHY?

I have realized that when Jesus was here, he said, “In this world you WILL have trouble. Take heart, I have overcome the world.”  This is truth. There is LOTS of trouble in the world. You really can’t avoid it. It’s everywhere and if you haven’t run into any yet, I promise, you will. Without the HOPE I have in God and an eternal purpose and plan, I don’t think I could overcome some of the turmoil I have been through.

Without the grace of God and the straying I have done in my life, I don’t think I would actually be alive today- and I am thankful that I didn’t take anyone else down along the way.

The truth is, God has changed my life. I was an angry, unloving person who would punch holes in walls and start fights. I didn’t know the power of that LOVE that is God and how it drives out fear and gives you a peace in times of uncertainty that just really doesn’t make sense.

I KNOW that kind of love now. I also know we live in a fallen world where that love does not reign-but darkness does…. That is why this isn’t our permanent residency and it why there IS trouble. Sickness. Pain. Suffering. Death. These things were not part of the original plan. Sin came in and it’s stayed.

I believe the Devil comes to steal, kill and destroy. Steal your joy, your faith, your foundation, belief system, love, compassion, kindness… anything good. He wants to kill-our relationships with God and others to separate,  cause death…. DESTROY-until there is none left-destruction- done.

I choose daily not to let that happen sometimes because sometimes it’s a daily struggle not to be overcome with grief and sorrow….

Forrest      dark forest path

Faith. I trust that based on my life experience so far, life is better with God. My relationship with Him is what has gotten me through so many things in life. Sometimes  I can see the forest ahead and it is light and it is beautiful and I walk with anticipation and excitement as I am on an adventure. Sometimes, it’s a little darker and I can’t see much except the path ahead — but I forge on knowing that it will lead me to where I am going. Sometimes, it’s pitch black and all I have is this tiny little ability to see the very next tiny little step and so I slow down and just focus on that tiny little step in the darkness….

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Faith…… we all have it in something. It’s our choice to decide where we put it.

 

The Leukemia Roller Coaster

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Last post boasted about the great work of chemo and cancer-free news!

This time, I write after another night of terrible sleep and watching Mark nap on and off as we wait for news about his newly developed bacterial infection.

Dizziness, fever, headache… turns out there is some bacteria present at least from pic line blood culture and we wait to rule out any other areas of infection. And we wait to hear what the doctors think should happen next. The Infectious Disease doctor was in and will meet with the other docs. to discuss and they will come in with a plan. In the mean time, he is on two IV antibiotics as well as the oral ones he has already been on. They will watch the blood cultures from the peripheral and pic line blood samples over the next five days. And decide what other areas of his body they need to test and or watch.

AND THIS JUST IN—> BOTH PERIPHERAL AND PIC LINE BLOOD CULTURES SHOW BACTERIAL INFECTION COCCIT CHAINS. MARK CONTINUES TO SLEEP- TWO IV ANTIBIOTICS – ONE EVERY EIGHT HOURS AND ONE ONCE A DAY EXTRA FLUIDS AGAIN THROUGH IV AS WELL.

This is life with or without Leukemia… there are ups and downs, some hills are steep, some, barely noticeable. Sometimes, you even get thrown around a loopty-loop and every once in a while you are full speed ahead and it seems that nothing could possibly change your path or throw you up out of your seat (thank God for safety restraints), because, then they hit and you are bouncing all around again!

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What I have known for forever, is that when you get to caught up in your own life, you become a miserable person. I don’t believe we were called to a life of “self-focus”. So, what we try to do is be a light even here, on the forth floor of this hospital for others. Whether we are going up, down or all around on our own ride, we realize everyone else is on a ride that does similar things.

So, we have met people here and become interested in their lives and asked them questions and let them know we care. Then, we pray for them and for you and for our own needs. We are all in this life together and I believe we were made to love and to be loved by God and other people.

There is an older man up here who can’t hear us, but he enjoys talking, George. He has loads of kids and grandkids and he gets out of his room and walks slowly and socializes with anyone he meets.

There is a guy named Mark from Ohio up here and his wife is Lisa and they live in Denver. He is a lot like my Mark. They both are determined to beat this illness they fight, they walk fast and they tell the doctors, “I don’t care what it takes. ” Funny, they are the same age and he grew up in Bowling Green not far from where Mark grew up in Lima.

Another young man, whose name escapes me- 40 – his mom lives in St Vrain Ranch- the neighborhood right next to ours. He lives in Mead. He may get to go home today! 🙂

Randy is in the room next door and always has a smile ready to share….

Then there is a new couple here from Kansas. They were like us and didn’t realize that this initial visit would not last days but weeks. I am thinking of taking Kathy, the wife to lunch.

Another couple, the wife has the illness and her husband is in the ministry and they are very supportive and caring people. You can see their love glowing around them.

We have had one very young guy who I only saw being brought up here with a neck brace. I saw them helping him walk once with a walker. He was about 19. He was transferred before I got to meet him, but I have prayed for him every day since I first saw him. A reminder, not to waste time- it doesn’t take much to say “Hello” and introduce yourself.

Sadly, there has been one couple- the first couple we met. Andy and Robin. They had been fighting Lymphoma for a year…. the last time I saw her, she was in the family waiting room with some friends and asked me how we were… after I told her, she said they were not doing well…. the next thing I knew, the very next day, they were gone. I imagine hospice was called in and they went home….

We are trying to get people interested in some social time around here- though, yesterday was the first day. We offered poker – and a few stopped by and talked, but none sat down to play yet, so we just played with our girls. But it’s a start. We need community and being up here in almost solitary confinement, it’s hard to keep the social aspect of living that we humans desperately need.

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The nurses and the doctors, though, too. We try to learn all their names. What a draining field to work in. Always helping and serving. What compassionate hearts they have-we have seen tears more than once. It’s fun to ask them about their families and lives and see their faces light up with joy. It’s also fun to hear them laugh and joke around with Mark as he lets them know his plans for getting out of here each day. 😉

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So, I guess what I am saying, is we are all riding a roller coaster of life. Whether we are sick or injured or healthy and strong. Life is never consistent and we are never better to live or ride alone.

Thank you for riding this coaster with us! We love and appreciate you! I want to leave you with this post I saw on Facebook today:

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I WILL RISE

This is the song the girls and I heard when we were discussing what the bracelets for Mark should say.

This is what we believe!

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When Mark and I first started going to church together we came across a lady at The Chapel at Blendon in Columbus, Ohio who had the congregation praying over her for healing. (She had cancer) What I remember most is that she had a grin on her face the whole time as they all laid hands on her and prayed. After the “Amen,” she said, “I know God is going to heal me. I will either be healed and be here with you, or I will be healed and be with God.” That has stuck with me all of these years. I believe that with my whole heart. God loves us and He does not want us broken and sick, but healed and I believe that he makes that happen one of two ways.

Looking back on the past few weeks I have shared with our girls this story and also the following:

There are always going to be statistics, numbers, percentages and the like on one hand – or negativity and skepticism – and on the other hand there are always going to be miracles, hope, God and in this case one of the most positive people I have ever met in my life- Mark Neu. OUR job is to decide which side -or hand- we will focus on. I CHOOSE to focus on the side of miracles, hope, God and Mark’s positivity. I simply cannot live on that other side full of negativity. Sure, there will be days when we sway in that direction, but we CAN’T STAY there.

When the doctors first talked to us about years… 2 years of remission being the goal as it is then that leukemia most likely won’t come back, Mark said, he wants at least 5 so he can see Cadence graduate and the girls will all be adults. I immediately reminded him that we aren’t focussing like that. NO ONE knows the amount of time they have on this earth and there is no reason for us to limit his time! Our job is to live EACH day like it could be our last. To be loving and full of joy so our days are well spent.

If you know Mark, you know this had to be said on his worst day. Maybe his worst day ever- but he didn’t stay there because he knows where his focus needs to be! He continues to point out good things… I have often teased him over the years because he will say in any bad situation, “Well, the good thing is…” He is blessed with a positive attitude!

Sometimes, a positive attitude has to be worked at and doesn’t come naturally. And sometimes even the most positive people can run into a bit of negative. The difference is realizing you have a choice to RISE ABOVE knowing that He Who is in YOU is greater than any other thing… and then making the choice to DO IT! I WILL RISE! Just like this song says!

So, I hope if you want to help us raise funds and are far away, you can sell these bracelets with us after ordering them on line at www.24hourwristbands.com or if you are local, you can purchase them from us or at our fundraiser on May 17th at Echo in Frederick! 🙂

We love you and appreciate so much your continued support!

Callico

 

 

 

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!